solutions / en The evolving role of real-world evidence in secondary fracture prevention /solutions/magazine/detail/article/the-evolving-role-of-real-world-evidence-in-secondary-fracture-prevention <span>The evolving role of real-world evidence in secondary fracture prevention </span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Steve Turley, Bone Health Developed Brands </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-04-11T11:52:02+02:00" title="Friday 11 April 2025 - 11:52">Fri 11/04/2025 - 11:52</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2025-04/steve_turley8.jpg.webp?itok=uSCnU_kl" width="100" height="133" alt typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>In osteoporosis research and clinical practice, the value of real-world evidence (RWE) is increasingly acknowledged; but much of its potential remains untapped. By analyzing real-world treatment patterns, RWE provides deeper insights into the effectiveness of osteoporosis treatments. Unlike clinical trials, which operate under controlled conditions, RWE captures the realities of routine clinical practice. &nbsp;</p><p>Worldwide, osteoporosis is estimated to cause fractures in a staggering one in three women over the age of 50, and in women over 45 years of age, osteoporosis accounts for more days in hospital than many other diseases, including diabetes, myocardial infarction and breast cancer.</p><p>With 71% of patients who sustain fractures related to osteoporosis remaining undiagnosed and untreated, data around treatment journeys is essential to help close the gap. A comprehensive picture of how patients experience care, manage their condition and navigate healthcare systems is lacking.</p><p><em>Highlighting the impact of RWE at WCO-IOF-ESCEO</em></p><p>At the 25th WCO-IOF-ESCEO鈥疌ongress in Rome, Italy, 金禾娱乐城, its partner, Amgen and investigators from supported investigator-initiated studies, are presenting eight abstracts, further building the body of RWE that can be used to elevate care for those at high risk of fracture. &nbsp;</p><p>These data will allow us to better characterize patients at high fracture risk and get a clearer picture of their treatment journeys. These insights are guiding how we support clinicians to prioritize early, targeted interventions for patients most at risk of fracture. &nbsp;</p><p>At 金禾娱乐城, it is our mission that everyone with osteoporosis at very high fracture risk (VHFR) receives the appropriate investigation and intervention that they need, with the aim to create a world free of fragility fractures.</p><p>We are fully embracing the opportunity that RWE brings, generating data that deepens understanding of VHFR care and informs better treatment decisions. By working closely with healthcare professionals to leverage real-world insights, we can ensure that fewer patients at very high fracture risk fall through the cracks.&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1507" hreflang="en"> bone</a> <a href="/taxonomy/term/1387" hreflang="en"> science</a> <a href="/taxonomy/term/1292" hreflang="en">osteoporosis</a> <a href="/taxonomy/term/10765" hreflang="en">WCO</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15483&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="XajggBhiVF6XsWm2kJ9cWi83scmcLDX7p3dXnlMPmkk"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> <div class="comment-wrap" data-comment-user-id="0" id="comment-43703"> <span class="block">Comment:</span> <div id="comment-43703" class="comment"> <span class="name-date"> Posted by <strong><span lang typeof="schema:Person" property="schema:name" datatype>yliana Mu帽oz Bravo </span></strong>, 15 April 2025 </span> <div class="comment--body"> <div class="field field--name-comment-body field--type-text-long field--label-hidden field__items"> <p>Excelente y beatyfull</p> </div> </div> </div> <drupal-render-placeholder callback="comment.lazy_builders:renderLinks" arguments="0=43703&amp;1=default&amp;2=en&amp;3=" token="PywjnVvwnRQPXku73LDchLJ7Ck6xWtjlgzODE641Jko"></drupal-render-placeholder> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/the-evolving-role-of-real-world-evidence-in-secondary-fracture-prevention" data-a2a-title="The evolving role of real-world evidence in secondary fracture prevention "><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fthe-evolving-role-of-real-world-evidence-in-secondary-fracture-prevention&amp;title=The%20evolving%20role%20of%20real-world%20evidence%20in%20secondary%20fracture%20prevention%20%20"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ4MyIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiIxMjAiLCJkaXNsaWtlcyI6IjEifQ%3D%3D"></a> <span class="like-15483"> 120 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Fri, 11 Apr 2025 09:52:02 +0000 Andrea_Puletto 15483 at World Parkinson鈥檚 Day 2025: Driving Change Through Collaboration /solutions/magazine/detail/article/world-parkinson-s-day-2025-driving-change-through-collaboration <span>World Parkinson鈥檚 Day 2025: Driving Change Through Collaboration </span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Kate Trenam, Patient Engagement Early Research </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-04-11T09:13:13+02:00" title="Friday 11 April 2025 - 09:13">Fri 11/04/2025 - 09:13</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2023-04/Kate%20Trenam.jpg.webp?itok=hbTeTnt5" width="90" height="90" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <article data-quickedit-entity-id="media/47311" class="media media--type-video media--view-mode-default"> <div class="field field--name-field-media-video-embed-field field--type-video-embed-field field--label-hidden field__items"> <div class="video-embed-field-provider-vimeo video-embed-field-responsive-video"><iframe width="854" height="480" frameborder="0" allowfullscreen="allowfullscreen" src="https://player.vimeo.com/video/1044983175?autoplay=0"></iframe> </div> </div> </article> <p>&nbsp;</p><p>World Parkinson鈥檚 Day is an important moment to reflect on the progress made in improving the lives of people living with Parkinson鈥檚 and to highlight ongoing challenges.&nbsp;</p><h3>The PECPR Initiative: A Model for Patient Engagement&nbsp;</h3><p>One of the key initiatives leading the way in this space is the Patient Engagement Council for Parkinson鈥檚 Research (PECPR). Formed through a collaboration between 金禾娱乐城, Parkinson鈥檚 UK, Parkinson鈥檚 Foundation, and patients, the PECPR exemplifies how meaningful partnerships between industry, patient groups, and people living with Parkinson鈥檚 can drive impactful outcomes.</p><p>Started in 2021, the initiative has grown into a dynamic platform where all stakeholders work together shoulder to shoulder to ensure that patient voices are embedded at every stage of clinical trials. The PECPR has developed a comprehensive playbook to help clinical trial teams integrate patient input early in the research process. This ensures that trials are designed with the patient experience in mind, leading to more impactful and inclusive results. &nbsp;</p><p>The PECPR was honored to have received the <a href="/solutions/magazine/detail/article/reflections-on-winning-the-made-with-patients-award-our-journey-in-parkinson-s-disease">Made With Patients Award</a> in 2024 - the first global award celebrating innovators in patient engagement. Hosted by Patient Engagement for Medicine Development (PFMD), the award recognizes outstanding contributions across medicine development, MedTech, digital health sectors, and more. &nbsp;&nbsp;</p><h3>A New Initiative for Health Equity in Research and Development</h3><p>This year also marks the launch of the Parkinson鈥檚 Health Equity in R&amp;D Community Leaders Board by 金禾娱乐城. The goal is to ensure that people from underserved backgrounds living with Parkinson鈥檚 are better represented in clinical trials. By doing so, 金禾娱乐城 aims to conduct clinical trials that more accurately reflect these populations, ultimately providing benefits to all patients.</p><p>The board鈥檚 objective is to create a platform where community leaders can share their real-world expertise and provide strategic guidance to 金禾娱乐城. Together, they aim to drive impactful initiatives across clinical programs, ensuring that equity and inclusion are integral to the way research and development operate.&nbsp;</p><h3>A Future of Hope and Progress</h3><p>This World Parkinson's Day, we celebrate the strides made in research, equity, and patient engagement鈥攁nd we reaffirm our commitment to creating a better future for all people living with Parkinson鈥檚. Initiatives like PECPR and the R&amp;D Community Leaders Board show that equitable, inclusive collaboration isn't just a buzzword; it's the foundation of meaningful progress.</p><p>Together, we are building a more inclusive and impactful research environment, one that aims to delivers unique outcomes for all communities. By continuing to listen, learn, and collaborate, we can ensure that the voices of people living with Parkinson鈥檚 remain central to everything we do.</p><p><a href="/solutions/diseases/parkinson-s-disease">Learn more about Parkinson鈥檚 &nbsp;</a></p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1347" hreflang="en"> neurology</a> <a href="/taxonomy/term/5435" hreflang="en"> Parkinson's </a> <a href="/taxonomy/term/1278" hreflang="en"> neuroscience</a> <a href="/taxonomy/term/5791" hreflang="en">World Parkinson's Day</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15482&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="vDcVzxyomKrEWIcy3DYgWB-oG6BjdtO88NgVIas98LQ"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> <div class="comment-wrap" data-comment-user-id="0" id="comment-43704"> <span class="block">Comment:</span> <div id="comment-43704" class="comment"> <span class="name-date"> Posted by <strong><span lang typeof="schema:Person" property="schema:name" datatype content="Yliana Carolina Mu帽oz Bravo ">Yliana Carolin鈥</span></strong>, 15 April 2025 </span> <div class="comment--body"> <div class="field field--name-comment-body field--type-text-long field--label-hidden field__items"> <p>Very important patology</p> </div> </div> </div> <drupal-render-placeholder callback="comment.lazy_builders:renderLinks" arguments="0=43704&amp;1=default&amp;2=en&amp;3=" token="UtAgYgzm1wOEEjpkVWSa8VRE0bCqy6UxSBaLHc_f_Qk"></drupal-render-placeholder> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/world-parkinson-s-day-2025-driving-change-through-collaboration" data-a2a-title="World Parkinson鈥檚 Day 2025: Driving Change Through Collaboration "><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fworld-parkinson-s-day-2025-driving-change-through-collaboration&amp;title=World%20Parkinson%E2%80%99s%20Day%202025%3A%20Driving%20Change%20Through%20Collaboration%20"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ4MiIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiIxMzEiLCJkaXNsaWtlcyI6IjEwNSJ9"></a> <span class="like-15482"> 131 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Fri, 11 Apr 2025 07:13:13 +0000 Andrea_Puletto 15482 at Advancing neurodegenerative disease research at AD/PD鈩 2025 International Conference on Alzheimer鈥檚 and Parkinson鈥檚 Diseases and related neurological disorders /solutions/magazine/detail/article/advancing-neurodegenerative-disease-research-at-adpdtm-2025-international-conference-on-alzheimer-s-and-parkinson-s-diseases-and-related-neurological-disorders <span>Advancing neurodegenerative disease research at AD/PD鈩 2025 International Conference on Alzheimer鈥檚 and Parkinson鈥檚 Diseases and related neurological disorders</span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Alexander Klein, Global Medical Neurodegeneration </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-04-02T10:53:07+02:00" title="Wednesday 2 April 2025 - 10:53">Wed 02/04/2025 - 10:53</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/author_images/alexander_klein_0.jpg.webp?itok=7LTCzUUE" width="50" height="66" alt="Alexander Klein, Patient Value Unit Neurology" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>At the AD/PD Congress, one of the leading global events for advancing science in Alzheimer鈥檚 and Parkinson鈥檚 diseases, we are reaffirming our commitment to tackling the challenges of these devastating neurodegenerative diseases. The conference provides an invaluable platform to connect with the scientific community, fuel dialogues that spark innovation, and drive progress in understanding the underlying mechanisms of these complex conditions. &nbsp;</p><p>Neurodegenerative diseases like Alzheimer鈥檚 and Parkinson鈥檚 present an urgent, unmet medical need. These conditions profoundly affect millions of individuals and their families worldwide, often robbing them of independence and quality of life. We recognize that current solutions often fall short in providing comprehensive care, and we are dedicated to researching to bridge these gaps with innovative solutions. To develop solutions effectively, we must first uncover the mysteries behind their onset and progression. &nbsp;</p><p>金禾娱乐城鈥檚 Parkinson's research program includes investigating mechanisms to inhibit the propagation of alpha-synuclein 鈥 a process believed to underlie the spread of neurodegeneration. Alongside this, we are advancing research into innovative therapies for symptom control, recognizing the diverse needs of each patient throughout their disease trajectory, from early to advanced stages.</p><p>We firmly believe that the patient voice is essential in shaping meaningful research and therapies. By prioritizing patient-led initiatives and collaborating directly with those affected, we ensure that our work reflects their needs, experiences, and hopes for the future. The <a href="/solutions/diseases/parkinson-s-disease/pecpr">Patient Engagement and Care Progression Research</a> (PECPR) initiative, established in 2021 is a collaborative effort to bring the patient community into the heart of early research and clinical development. The initiative strives to improve patient outcomes by working together on a patient-centered research model, embedding patient involvement throughout 金禾娱乐城鈥檚 Parkinson鈥檚 drug development portfolio, and fostering global collaboration to advance Parkinson鈥檚 research.</p><p>In Alzheimer's, we're hoping to find therapies that can slow the progression of the disease, and recent data from our development program is also on show at AD/PD. Alzheimer鈥檚 disease occurs when harmful plaques and tangles comprised of 尾-amyloid and tau protein build up in the brain, disrupting its function and leading to cognitive decline and dementia.</p><p>By progressing the science, working together and listening to the patient voice, we aim to move closer to a world where no family has to face the burden of neurodegenerative disease alone. To every scientist and researcher who joined us at AD/PD 鈥 thank you. Your dedication and ideas inspire hope and progress. Together, we are working towards a better future in neurodegenerative science, for patients now and in the future.&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1708" hreflang="en"> neurology </a> <a href="/taxonomy/term/5437" hreflang="en"> epilepsy</a> <a href="/taxonomy/term/1352" hreflang="en"> innovation </a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15478&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="SFJ6kBhoBRPSQ37sRVwaGPKyR8ZVAxfeBnq4lbHi-9s"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/advancing-neurodegenerative-disease-research-at-adpdtm-2025-international-conference-on-alzheimer-s-and-parkinson-s-diseases-and-related-neurological-disorders" data-a2a-title="Advancing neurodegenerative disease research at AD/PD鈩 2025 International Conference on Alzheimer鈥檚 and Parkinson鈥檚 Diseases and related neurological disorders"><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fadvancing-neurodegenerative-disease-research-at-adpdtm-2025-international-conference-on-alzheimer-s-and-parkinson-s-diseases-and-related-neurological-disorders&amp;title=Advancing%20neurodegenerative%20disease%20research%20at%20AD%2FPD%E2%84%A2%202025%20International%20Conference%20on%20Alzheimer%E2%80%99s%20and%20Parkinson%E2%80%99s%20Diseases%20and%20related%20neurological%20disorders"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ3OCIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiI2MyIsImRpc2xpa2VzIjoiMCJ9"></a> <span class="like-15478"> 63 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Wed, 02 Apr 2025 08:53:07 +0000 Andrea_Puletto 15478 at Innovating in neurology: 金禾娱乐城's commitment shines at AAN 2025 /solutions/magazine/detail/article/innovating-in-neurology-ucb-s-commitment-shines-at-aan-2025 <span>Innovating in neurology: 金禾娱乐城's commitment shines at AAN 2025 </span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Donatello Crocetta, Global Rare Disease锛哛are Medical </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-04-02T10:31:25+02:00" title="Wednesday 2 April 2025 - 10:31">Wed 02/04/2025 - 10:31</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2022-09/Donatello%20Crocetta%20-%20Copy.jpg.webp?itok=JJw8pr14" width="85" height="100" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p>As we prepare for the American Academy of Neurology (AAN) congress, we're excited to showcase 金禾娱乐城's dedication to transforming care for individuals living with neurological conditions. The AAN annual meeting isn't just an event; it's a gathering of the brightest minds in neurology, where breakthroughs are shared, and challenges are tackled head-on.</p><h2>A focus on valuable solutions</h2><p>At 金禾娱乐城, our passion in neurology is deeply rooted in our history. We have always strived to push the boundaries and redefine what is possible in neurological care. From creating a meaningful impact for conditions like generalized Myasthenia Gravis (gMG) to developing solutions for rare epileptic syndromes such as Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS), 金禾娱乐城 has consistently led with innovation and compassion. Our research explores the effect of these conditions on quality of life, not just for patients but also for their families, paving the way for better disease management and, ultimately, better lives.</p><h2>Showcasing innovation at AAN</h2><p>Among the 24 abstracts accepted for the AAN congress, we are presenting new late-stage clinical trial findings that support the efficacy and safety of our therapies in epilepsy; insights from a new international patient registry for gMG; and findings that progress our understanding of the disease course of TK2d.</p><p>金禾娱乐城 is proud to host its inaugural US Rare Disease Connect in Neurology (RDCN) Annual Summit at the 2025 American Academy of Neurology (AAN) Annual Meeting to provide a forum for needs-driven medical education for the generalized myasthenia gravis community (gMG). This event is being held exclusively for healthcare providers who are involved in patient care. RDCN is an ongoing global learning program connecting a community of experts committed to delivering excellence for people living with gMG. The RDCN network is expanding to the US, specifically with the goal to foster collaboration for comprehensive gMG care.</p><h2>Our commitment to science and care</h2><p>First and foremost, 金禾娱乐城鈥檚 presence at AAN reflects our unwavering commitment to collaboration with the scientific, medical, and patient communities. We believe that engaging directly with those who live with these conditions, their caregivers, and healthcare providers allows us to tailor our strategies and focus on what truly matters.</p><p>Our commitment to collaboration and leveraging real-world insights is central to our approach as we strive to create a future where every person with a neurological condition can achieve optimized care and management. Together, we can drive change and shape a brighter future in the field of neurology, ensuring that our efforts translate into meaningful improvements for those who rely on our innovations.&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1352" hreflang="en"> innovation </a> <a href="/taxonomy/term/5437" hreflang="en"> epilepsy</a> <a href="/taxonomy/term/1347" hreflang="en"> neurology</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15477&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="NRLfi2aE5m4gNpYNMd_VqKjFknNqMDoyAFnbgB5JsDU"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/innovating-in-neurology-ucb-s-commitment-shines-at-aan-2025" data-a2a-title="Innovating in neurology: 金禾娱乐城's commitment shines at AAN 2025 "><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Finnovating-in-neurology-ucb-s-commitment-shines-at-aan-2025&amp;title=Innovating%20in%20neurology%3A%20金禾娱乐城%27s%20commitment%20shines%20at%20AAN%202025%20"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ3NyIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiI1NCIsImRpc2xpa2VzIjoiMCJ9"></a> <span class="like-15477"> 54 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Wed, 02 Apr 2025 08:31:25 +0000 Andrea_Puletto 15477 at Our Commitment to Advancing Treatments for TK2d /solutions/magazine/detail/article/our-commitment-to-advancing-treatments-for-tk2d <span>Our Commitment to Advancing Treatments for TK2d</span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Fabian Somers, Patient Evidence </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-03-18T08:47:15+01:00" title="Tuesday 18 March 2025 - 08:47">Tue 18/03/2025 - 08:47</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2025-03/userphoto_6.jpg.webp?itok=OkXr6Vis" width="100" height="130" alt typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>At 金禾娱乐城 we are driven by our commitment to people living with severe diseases who inspire our research and development across neurology, immunology, and other areas where our, expertise, innovation and ambition align with unmet needs. &nbsp;</p><p>One such area of unmet need is in the management of thymidine kinase 2 deficiency (TK2d), where there are no approved therapies or international clinical guidelines. This rare, debilitating mitochondrial disorder affects children and adults, leading to progressive muscle weakness and severe mobility and respiratory challenges.</p><p>We recognize the urgent need for innovative therapies and are committed to driving research forward. Our team is working tirelessly to advance potential treatments that target the underlying causes of TK2d, offering hope to patients and families who currently have limited options. By collaborating with leading researchers, patient advocacy groups, and the medical community, we aim to accelerate the development of effective treatments that improve quality of life.</p><p>Every breakthrough begins with a commitment to those affected. We stand with the TK2d community and will continue to invest in advancing medical education and breakthrough science, ensuring that no one facing this condition is left without hope.</p><p>Stay connected with us for updates on our progress and learn how we鈥檙e making a difference. Together, we can bring new possibilities to those in need.&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/10191" hreflang="en">TK2d</a> <a href="/taxonomy/term/1895" hreflang="en"> Rare Disease</a> <a href="/taxonomy/term/1347" hreflang="en"> neurology</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15471&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="QeXa6piQQdRXhzxJhzNaFGHcRVAK-jEjJphWKxQ3eqY"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/our-commitment-to-advancing-treatments-for-tk2d" data-a2a-title="Our Commitment to Advancing Treatments for TK2d"><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Four-commitment-to-advancing-treatments-for-tk2d&amp;title=Our%20Commitment%20to%20Advancing%20Treatments%20for%20TK2d"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ3MSIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiI4NyIsImRpc2xpa2VzIjoiMCJ9"></a> <span class="like-15471"> 87 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Tue, 18 Mar 2025 07:47:15 +0000 Andrea_Puletto 15471 at Exploring the future of immuno-dermatology care: 金禾娱乐城 at AAD Annual Meeting 2025 /solutions/magazine/detail/article/exploring-the-future-of-immuno-dermatology-care-ucb-at-aad-annual-meeting-2025 <span>Exploring the future of immuno-dermatology care: 金禾娱乐城 at AAD Annual Meeting 2025 </span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Simon Lucas, Patient Evidence </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-03-07T11:45:19+01:00" title="Friday 7 March 2025 - 11:45">Fri 07/03/2025 - 11:45</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2025-03/userphoto_5.jpg.webp?itok=5KEJT9uC" width="100" height="148" alt typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>This week for the 2025 Annual Meeting of the American Academy of Dermatology (AAD), we look forward to connecting with clinicians, researchers and the dermatology community in Orlando who share our passion for advancing patient care. This flagship event in the dermatology calendar promises to be a dynamic forum for advancing scientific exchange and fostering the connections that lead to life-changing solutions.</p><p>Chronic immuno-dermatology diseases place a significant burden on patients and while important advances have been made in recent years, we remain deeply committed to addressing the substantial unmet needs and improving the lives of those affected. Long-term data are particularly meaningful, providing deeper insights that are especially important for those living with chronic conditions. &nbsp;</p><p>This year, for AAD we are excited to continue to expand the growing body of research across multiple immuno-dermatology diseases with the presentation of 18 abstracts, including in hidradenitis suppurativa (HS) and psoriasis, as part of our ambitious research programs aimed at transforming the future care within the next decade. &nbsp;</p><p>Visitors to our exhibition booth will have the opportunity to learn about our ongoing research, patient support programs and education initiatives. We look forward to connecting and collaborating at the 2025 AAD Congress as we work together to transform dermatological care.</p><p>If you are a healthcare professional attending AAD, join us at our scientific symposia or visit our booth to learn more. We look forward to meeting you in Orlando!&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15452&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="c_8w7mPEaiWgf17QcXHOcHbAWBbh9AN6p2bwDCa1MoM"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/exploring-the-future-of-immuno-dermatology-care-ucb-at-aad-annual-meeting-2025" data-a2a-title="Exploring the future of immuno-dermatology care: 金禾娱乐城 at AAD Annual Meeting 2025 "><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fexploring-the-future-of-immuno-dermatology-care-ucb-at-aad-annual-meeting-2025&amp;title=Exploring%20the%20future%20of%20immuno-dermatology%20care%3A%20金禾娱乐城%20at%20AAD%20Annual%20Meeting%202025%20"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQ1MiIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiIxMzkiLCJkaXNsaWtlcyI6IjYwIn0%3D"></a> <span class="like-15452"> 139 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Fri, 07 Mar 2025 10:45:19 +0000 Andrea_Puletto 15452 at 金禾娱乐城Cares庐 - a decade of support and beyond /solutions/magazine/detail/article/ucbcaresr-a-decade-of-support-and-beyond <span>金禾娱乐城Cares庐 - a decade of support and beyond</span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Sarah Mertens, 金禾娱乐城Cares庐 </div> <span><span lang about="/user/8671" typeof="schema:Person" property="schema:name" datatype content="Nathalie.Vandenbruaene@ucb.com">Vandenbruaene 鈥</span></span> <span><time datetime="2025-02-11T17:20:36+01:00" title="Tuesday 11 February 2025 - 17:20">Tue 11/02/2025 - 17:20</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2025-02/sarah_mertens.jpg.webp?itok=UhtKUYM5" width="72" height="72" alt typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>金禾娱乐城Cares庐 proudly celebrates its 10th anniversary - a decade dedicated to supporting people living with severe diseases, caregivers, and healthcare providers with compassion and professionalism.</p><p>金禾娱乐城Cares庐 is 金禾娱乐城's global support center, functioning as a critical bridge between our company, healthcare providers, and the people we serve. Established in 37 countries, 金禾娱乐城Cares庐 resolves over 58,000 inquiries annually, providing real-time, localized assistance around 金禾娱乐城's medicines and solutions. The inquiries handled by 金禾娱乐城Cares庐 span diverse areas, including supply, medical, customer service, safety and product quality concerns.</p><p>金禾娱乐城Cares庐 interacts with a variety of our stakeholders, including physicians and patients who make up 25% of interactions. This customer-centric approach helps 金禾娱乐城Cares庐 foster a positive impact on people鈥檚 lives as they often reach out with specific questions about their medication. Underpinning 金禾娱乐城's commitment to patients, 金禾娱乐城Cares庐 strives to provide tailored information, materials, services, or support. This approach results in 79% of people accepting additional resources, showcasing the impact of these personalized measures.</p><p>Most inquiries are resolved the same day, offering a one-stop solution for people鈥檚 needs via immediate and accurate information about 金禾娱乐城 medications. This swift response rate ensures stakeholder satisfaction, with 96% of people calling us rating 金禾娱乐城Cares庐 +9 out of 10.</p><p>金禾娱乐城Cares庐 also transforms everyday interactions into valuable insights, using AI tools to pinpoint trends and identify actionable insights that can shape our company鈥檚 priorities. For example, the service has identified an opportunity to better support pharmacists with dedicated resources, helping to improve access to our medicines and &nbsp;address misconceptions about medicine use and safety through educative material and campaigns.</p><p>In essence, 金禾娱乐城Cares庐 is more than a support center. It's a service that reinforces our engagement towards people living with severe diseases and healthcare providers, exemplifying 金禾娱乐城鈥檚 commitment to improving lives through efficient service and insightful data utilization.</p><p>This milestone is a testament to 金禾娱乐城鈥檚 unwavering commitment to improving lives, and it serves as a reminder of the incredible impact that consistent and empathetic support can have on communities worldwide.</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/10464" hreflang="en">金禾娱乐城Cares</a> <a href="/taxonomy/term/10729" hreflang="en">support center</a> <a href="/taxonomy/term/10730" hreflang="en">helpline</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15404&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="bpEC-q1gLWeoDPR7QgG3DzDHlpvMTQbiP98ZaMiJ108"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> <div class="comment-wrap" data-comment-user-id="0" id="comment-43697"> <span class="block">Comment:</span> <div id="comment-43697" class="comment"> <span class="name-date"> Posted by <strong><span lang typeof="schema:Person" property="schema:name" datatype>Peter Arthur</span></strong>, 19 February 2025 </span> <div class="comment--body"> <div class="field field--name-comment-body field--type-text-long field--label-hidden field__items"> <p>Proud of having been part of the 金禾娱乐城Cares family, keep up the good work you are doing every day<br> 馃馃憦馃憦馃憦</p> </div> </div> </div> <drupal-render-placeholder callback="comment.lazy_builders:renderLinks" arguments="0=43697&amp;1=default&amp;2=en&amp;3=" token="VE4Q52pl25scbd297LUZSyH0H9ewz50Iv7nf-WEM-6c"></drupal-render-placeholder> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/ucbcaresr-a-decade-of-support-and-beyond" data-a2a-title="金禾娱乐城Cares庐 - a decade of support and beyond"><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fucbcaresr-a-decade-of-support-and-beyond&amp;title=金禾娱乐城Cares%C2%AE%20-%20a%20decade%20of%20support%20and%20beyond"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQwNCIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiI5MSIsImRpc2xpa2VzIjoiMSJ9"></a> <span class="like-15404"> 91 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Tue, 11 Feb 2025 16:20:36 +0000 Vandenbruaene Nathalie 15404 at More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies /solutions/magazine/detail/article/more-than-you-can-imagine-shedding-light-on-the-burden-of-rare-epilepsies <span>More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies </span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Andrea Wilkinson, Global Epilepsy &amp; Rare Syndromes </div> <span><span lang about="/user/9417" typeof="schema:Person" property="schema:name" datatype>Andrea_Puletto</span></span> <span><time datetime="2025-02-10T10:50:16+01:00" title="Monday 10 February 2025 - 10:50">Mon 10/02/2025 - 10:50</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2023-10/Andrea%20Wilkinson.png.webp?itok=DUxnwTL9" width="100" height="100" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>When we think of epilepsies, the most common thing that comes to mind is seizures. While seizures remain the hallmark symptom of DEEs (Developmental and Epileptic Encephalopathy) such as Dravet syndrome, Lennox-Gastaut syndrome and CDKL5鈥痙eficiency disorder, patients live with additional comorbidities that often go unnoticed but which have a profound and multifaceted impact on their lives. These rare conditions are associated with a host of physical, cognitive and behavioral challenges, taking a significant toll not only on individuals but also on caregivers and families, shaping every aspect of their daily lives.</p><p>With International Epilepsy Day on 10 February 2025, followed closely by Rare Disease Day on 28 February, themed <em>鈥楳ore than you can imagine鈥</em>, it鈥檚 an opportune time to shine a light on the non-seizure burdens that these conditions are accompanied by, as well as the impact they have on both patients and their loved ones. &nbsp;</p><h3>Looking beyond seizures</h3><p><a href="/solutions/diseases/dravet-syndrome">Dravet syndrome (DS)</a>, <a href="/solutions/diseases/LGS">Lennox-Gastaut syndrome (LGS)</a> and <a href="/solutions/diseases/CDKL5-deficiency-disorder">CDKL5鈥痙eficiency disorder (CDD)</a> are all rare forms of epilepsy classified as developmental and epileptic encephalopathies (DEEs). Living with these syndromes or conditions is far more complex than managing seizures alone, involving comorbidities that impact cognitive, emotional, and physical well-being. For instance, people with DS often contend with developmental delays, communication difficulties, and mobility issues such as a crouched gait.1 LGS is associated with profound intellectual disabilities and severe behavioural challenges such as aggression or hyperactivity, and CDD can result in musculoskeletal problems like scoliosis, lack of ability to develop speech, and delays or failure to achieve both gross and fine motor skills.</p><p>These DEEs don鈥檛 end with the individual 鈥 they affect the quality of life of families and siblings, caregivers and their broader support system, causing a ripple effect that touches every facet of living.</p><p>Anxiety, constant vigilance, chronic sleep disruptions caused by night-time seizures, and the strain of navigating complex healthcare systems can leave families feeling overwhelmed. Caregivers often report high levels of emotional stress and information overload, particularly following diagnosis when their need for specialty healthcare and support is especially high. Furthermore, the unrelenting nature of evolving symptoms, compounded by frequent medical appointments and therapy sessions, can make day-to-day life exhausting and isolating.</p><p>Although people鈥檚 experiences of living with a DEE will be unique, there are some commonalities that may help to direct future research pursuits. For example, unpredictable seizure activity, irregular sleep patterns and disrupted behavior have all been reported by caregivers as negatively impacting quality of life, leading their loved ones to temporarily lose communication abilities or other activities of daily living. Gaining a better understanding of the disruptive nature of rare epilepsies, and the symptoms that matter most to patients and their families, will help researchers to prioritize areas of scientific focus and improve outcomes.</p><h3>Working together to address the non-seizure burden&nbsp;</h3><p>At 金禾娱乐城, we firmly believe that improving care for people living with epilepsy means addressing both seizure and non-seizure-related outcomes as well as survival of these complex conditions. This requires a holistic approach, with research that expands on current disease understanding, combined with initiatives that promote earlier diagnosis,鈥痚nhance treatment innovation, and strengthen support systems. Together, we must foster greater recognition of rare epilepsies, prioritizing both medical and non-medical needs to enhance both patient and family outcomes.&nbsp;</p><h3>鈥楳ore Than You Can Imagine鈥 鈥 A theme to remember&nbsp;</h3><p>The 2025 theme of Rare Disease Day is a timely reminder that while rare conditions like DS, LGS and CDD may be classified under the umbrella of 鈥渆pilepsy鈥, their complexities extend far beyond seizures. Recognizing these challenges 鈥 and addressing them 鈥 could change what is often an overwhelming diagnosis into a life supported by compassionate resources and initiatives. &nbsp;</p><p>We invite you to help us increase understanding of the broader impacts of epilepsy. Whether it鈥檚 by engaging with advocacy organizations, supporting caregivers, or simply listening to the experiences of those affected, we can all contribute to building a world where no one feels unsupported in their epilepsy journey. Because when you look beyond seizures, you鈥檒l find stories of resilience, expert voices longing to be heard, and an urgent need to bridge gaps in treatment and care. Together, we can inspire more comprehensive care models that look beyond seizures to encompass the broader spectrum of challenges that rare epilepsy communities face.&nbsp;</p><p>&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1347" hreflang="en"> neurology</a> <a href="/taxonomy/term/5437" hreflang="en"> epilepsy</a> <a href="/taxonomy/term/10191" hreflang="en">TK2d</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15403&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="fooraoAvs8Jw5hOQ1ia6Eu5WKG4N_FzB9TnqQAKI5Bg"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/more-than-you-can-imagine-shedding-light-on-the-burden-of-rare-epilepsies" data-a2a-title="More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies "><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fmore-than-you-can-imagine-shedding-light-on-the-burden-of-rare-epilepsies&amp;title=More%20Than%20You%20Can%20Imagine%3A%20Shedding%20Light%20on%20the%20Burden%20of%20Rare%20Epilepsies%20"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTQwMyIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiI4NCIsImRpc2xpa2VzIjoiMCJ9"></a> <span class="like-15403"> 84 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Mon, 10 Feb 2025 09:50:16 +0000 Andrea_Puletto 15403 at 金禾娱乐城鈥檚 commitment to understanding Sudden Unexpected Death in Epilepsy /solutions/magazine/detail/article/ucb-s-commitment-to-understanding-sudden-unexpected-death-in-epilepsy <span>金禾娱乐城鈥檚 commitment to understanding Sudden Unexpected Death in Epilepsy</span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Andrea Wilkinson, Patient Engagement, Epilepsy &amp; Rare Syndromes </div> <span><span lang about="/user/8671" typeof="schema:Person" property="schema:name" datatype content="Nathalie.Vandenbruaene@ucb.com">Vandenbruaene 鈥</span></span> <span><time datetime="2024-10-16T12:42:44+02:00" title="Wednesday 16 October 2024 - 12:42">Wed 16/10/2024 - 12:42</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2023-09/Andrea%20Wilkinson2_0.JPG.webp?itok=meypAlAO" width="93" height="94" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p><br>Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a person living with epilepsy dies suddenly and prematurely for no known obvious reason.鈥疘t is a leading cause of death in people with epilepsy and represents an unimaginable outcome for anyone living with epilepsy and their loved ones. Discussing SUDEP is challenging, yet addressing this tough subject reflects the expressed needs of individuals affected by epilepsy.&nbsp;</p><p>SUDEP Action Day on October 16 is dedicated to raising awareness of the risk of sudden death in epilepsy and aspires to stop preventable deaths. A time when epilepsy organisations across the world come together with a singular purpose: to encourage all healthcare providers, individuals with epilepsy and their families to actively engage in conversations about minimizing SUDEP risks and participating in shared decision-making. &nbsp;The benefits of shared decision-making include improved decision quality, empowering patients to make more informed choices and better treatment consistency.</p><p>For 金禾娱乐城, SUDEP Action Day is aligned with our mission to advance understanding around epilepsy, improve awareness, and elevate the unmet needs of patients and their families. Under this year鈥檚 theme of #OurRisksOurRights, we support the goal that every person living with epilepsy should know their SUDEP risk. Integral to this is early epilepsy diagnosis, access to plain language information, medication adherence, updated emergency seizure action plans and the need for improved care coordination.</p><p><strong>Understanding SUDEP risk</strong><br>While no one knows exactly what causes SUDEP, researchers are investigating several possibilities, like the effect of seizures on the heart, the brain and breathing. Certain factors can increase the likelihood of SUDEP, such as frequency of generalized tonic-clonic seizure (GTCS), nocturnal seizures, medication adherence and/or failure to adequately control treatment-resistant seizures.</p><p>According to the International League Against Epilepsy, optimizing seizure control, especially GTCS, is the most important measure in reducing a person鈥檚 risk of SUDEP.5 However, despite currently available antiseizure medications, 1 in 150 people with uncontrolled seizures die from SUDEP every year. Some people with rare and complex epilepsies continue to experience frequent and uncontrolled seizures and remain at a higher risk of SUDEP.</p><p>For example, children with Dravet syndrome are 15 times more likely to die suddenly. Those with Lennox-Gastaut syndrome have a 24 times greater likelihood of premature death compared to individuals with other childhood epilepsies. Emerging research estimates that SUDEP rate is 2.8 per 1,000 person-years.</p><p>It is equally shocking to learn that the risk of early death and SUDEP is higher among lower income groups. In fact, people with epilepsy who are in poor health or live on a low income tend to live about 17 years less than average and this is especially true for young and middle-aged adults.</p><p><strong>金禾娱乐城鈥檚 commitment to SUDEP</strong><br>At 金禾娱乐城, we are aligned with the patient and healthcare community鈥檚 desire to reduce preventable deaths from epilepsy by investing in research partnerships, new technologies and championing disease awareness.</p><p>SUDEP occurs most often at night or during sleep, leaving many unanswered research questions.鈥鸷逃槔殖 supports Neurava, a medical device start-up that has developed a first-of-its-kind device work around the neck and bicep at night which has the potential to save lives by identifying key biological signals related to epilepsy, tracking seizures and impending SUDEP risk.</p><p>Global clinical guidelines recommend counseling &nbsp;people with epilepsy (PWE) on sudden unexpected death in epilepsy (SUDEP). 金禾娱乐城 proudly collaborated with the Child Neurology Foundation alongside Partners Against Mortality in Epilepsy and 20 other organizations to develop the <a href="https://preventingepilepsydeaths.org/" target="_blank">Clinical Toolkit for Preventing Epilepsy Deaths</a>. The toolkit focuses on behavior change by offering health providers and patients tips for on how to talk about mortality risk factors, preventative measures, and treatment options.</p><p><strong>Looking ahead</strong><br>As we advance our understanding of human biology and neurological diseases, we aim to drive innovation in epilepsy alongside clinicians, academics and patient communities. By specifically targeting the mechanisms underpinning SUDEP, we hope to identify the causes and potential biomarkers of SUDEP and reduce the major risk factors for this devastating outcome.</p><p>On SUDEP Action Day, we stand with the community and encourage everybody to raise awareness of the risks of sudden death in epilepsy.鈥</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/10445" hreflang="en">Sudden Unexpected Death in Epilepsy</a> <a href="/taxonomy/term/10444" hreflang="en">SUDEP</a> <a href="/taxonomy/term/5437" hreflang="en"> epilepsy</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15102&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="D4uFP-GlQUmEDArqpEIjq9vRA0FPbFOtHFoyZyrqS6E"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/ucb-s-commitment-to-understanding-sudden-unexpected-death-in-epilepsy" data-a2a-title="金禾娱乐城鈥檚 commitment to understanding Sudden Unexpected Death in Epilepsy"><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fucb-s-commitment-to-understanding-sudden-unexpected-death-in-epilepsy&amp;title=金禾娱乐城%E2%80%99s%20commitment%20to%20understanding%20Sudden%20Unexpected%20Death%20in%20Epilepsy"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTEwMiIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiIxNTYiLCJkaXNsaWtlcyI6IjAifQ%3D%3D"></a> <span class="like-15102"> 156 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Wed, 16 Oct 2024 10:42:44 +0000 Vandenbruaene Nathalie 15102 at Redefining immunology care: our pledge to patients and the healthcare community /solutions/magazine/detail/article/redefining-immunology-care-our-pledge-to-patients-and-the-healthcare-community <span>Redefining immunology care: our pledge to patients and the healthcare community</span> <div class="field field--name-field-newsroom-author-title field--type-string field--label-above field__items"> Camille Lee, U.S. Immunology </div> <span><span lang about="/user/8671" typeof="schema:Person" property="schema:name" datatype content="Nathalie.Vandenbruaene@ucb.com">Vandenbruaene 鈥</span></span> <span><time datetime="2024-09-23T10:15:38+02:00" title="Monday 23 September 2024 - 10:15">Mon 23/09/2024 - 10:15</time> </span> <div class="field field--name-field-newsroom-author-image field--type-entity-reference field--label-above field__items"> <article class="media media--type-image media--view-mode-default"> <div class="field field--name-image field--type-image field--label-hidden field__items"> <img loading="lazy" src="/sites/default/files/styles/ucb_header_image/public/2023-10/Camille%20Lee.png.webp?itok=EFr4hua5" width="81" height="100" typeof="foaf:Image"> </div> </article> </div> <div class="field field--name-field-newsroom-content field--type-text-long field--label-above field__items"> <p>Throughout my career and now in my role as head of U.S. Immunology at 金禾娱乐城, the stories I hear from patients inspire my work each day. At 金禾娱乐城, we are dedicated to developing solutions for people living with chronic immune-mediated diseases, including psoriatic arthritis (PsA)鈥攚hich can affect about 30 percent of people living with psoriasis鈥攁s well as lesser-known forms of arthritis like non-radiographic axial spondyloarthritis (nr-axSpA) and ankylosing spondylitis (AS).</p><p>At the heart of our commitment to addressing gaps in care lies innovation. 金禾娱乐城 is proud to be advancing care with a new solution now available for healthcare providers and their patients.&nbsp;</p><p>We know severe rheumatic diseases not only affect physical health but can also impact a person鈥檚 ability to take part in everyday activities such as participating in hobbies and recreational activities, socializing with loved ones, and completing household chores. People living with rheumatic diseases often struggle to find long-term disease management solutions that work for them.</p><article data-quickedit-entity-id="media/46315" class="media media--type-video media--view-mode-default"> <div class="field field--name-field-media-video-embed-field field--type-video-embed-field field--label-hidden field__items"> <div class="video-embed-field-provider-vimeo video-embed-field-responsive-video"><iframe width="854" height="480" frameborder="0" allowfullscreen="allowfullscreen" src="https://player.vimeo.com/video/1011939423?autoplay=0"></iframe> </div> </div> </article> <p>That鈥檚 why our focus in Immunology at 金禾娱乐城 is developing and providing treatments so that people living with rheumatic or dermatologic diseases, particularly those who have struggled with treatment options, can strive to live their best lives, tackling the activities that once felt like a burden.</p><p>金禾娱乐城 is also leading the way in setting higher standards for treatments across immunology. In our PsA clinical trials, we used the American College of Rheumatology (ACR)50 endpoint, which signifies a 50% improvement in symptoms and disease, as a measure of success. This endpoint is more rigorous than the more commonly used ACR20, the 20% improvement marker. By setting this higher standard, we prioritize developing medicines that make a significant impact on patient health.&nbsp;</p><p>As our pipeline grows, our approach will continue to evolve to meet the needs of the patient communities we aim to serve. I am confident our bold and exciting research programs will help change the future of immunology care within the next decade.&nbsp;</p> </div> <div class="field field--name-field-newsroom-category field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1909" hreflang="en">solutions</a> </div> <div class="field field--name-field-newsroom-tags field--type-entity-reference field--label-above field__items"> <a href="/taxonomy/term/1468" hreflang="en"> rheumatic diseases</a> <a href="/taxonomy/term/1244" hreflang="en"> Immunology</a> <a href="/taxonomy/term/1355" hreflang="en"> psoriatic arthritis</a> <a href="/taxonomy/term/10535" hreflang="en">non-radiographic axial spondyloarthritis </a> <a href="/taxonomy/term/1419" hreflang="en"> ankylosing spondylitis</a> </div> <div> <div class="comments-wrapper"> <div class="comment-area"> <h2 class="red">Leave a Comment</h2> <drupal-render-placeholder callback="comment.lazy_builders:renderForm" arguments="0=node&amp;1=15080&amp;2=field_newsroom_askexpert&amp;3=ask_expert" token="-38ZpNV2aKKa3cFnqGI2cLDl1D56D2OwjyIO_g_dJmA"></drupal-render-placeholder> <span class="toggle-form js-toggle-form"></span> </div> </div> </div> <span class="a2a_kit a2a_kit_size_16 addtoany_list" data-a2a-url="/solutions/magazine/detail/article/redefining-immunology-care-our-pledge-to-patients-and-the-healthcare-community" data-a2a-title="Redefining immunology care: our pledge to patients and the healthcare community"><a class="a2a_dd addtoany_share" href="https://www.addtoany.com/share#url=https%3A%2F%2Fwww.ucb.com%2Fsolutions%2Fmagazine%2Fdetail%2Farticle%2Fredefining-immunology-care-our-pledge-to-patients-and-the-healthcare-community&amp;title=Redefining%20immunology%20care%3A%20our%20pledge%20to%20patients%20and%20the%20healthcare%20community"></a><a class="a2a_button a2a_button_facebook"><img src="/themes/custom/ucb_premier/images/a2a/facebook-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_linkedin"><img src="/themes/custom/ucb_premier/images/a2a/linkedin-icon.svg" width="16" height="16" border="0" alt="linkedin"></a><a class="a2a_button a2a_button_twitter"><img src="/themes/custom/ucb_premier/images/a2a/twitter-icon.svg" width="16" height="16" border="0" alt="twitter"></a></span> <div class="field field--name-field-like field--type-likes-dislikes field--label-above field__items"> <div class="like_dislike"> <div class="like"> <a rel="nofollow" class="use-ajax" href="/like-dislike/like/eyJlbnRpdHlfdHlwZSI6Im5vZGUiLCJlbnRpdHlfaWQiOiIxNTA4MCIsImZpZWxkX25hbWUiOiJmaWVsZF9saWtlIiwibGlrZXMiOiIxNDQiLCJkaXNsaWtlcyI6IjAifQ%3D%3D"></a> <span class="like-15080"> 144 Likes </span> </div> </div> <div id="like_dislike_status"></div> </div> Mon, 23 Sep 2024 08:15:38 +0000 Vandenbruaene Nathalie 15080 at