neurology

World Parkinson’s Day 2025: Driving Change Through Collaboration

Andrea_Puletto — Fri, 11 Apr 2025 07:13:13 +0000

World Parkinson’s Day 2025: Driving Change Through Collaboration

Kate Trenam, Patient Engagement Early Research

Andrea_Puletto Fri 11/04/2025 - 09:13

World Parkinson’s Day is an important moment to reflect on the progress made in improving the lives of people living with Parkinson’s and to highlight ongoing challenges.

The PECPR Initiative: A Model for Patient Engagement

One of the key initiatives leading the way in this space is the Patient Engagement Council for Parkinson’s Research (PECPR). Formed through a collaboration between ��ֳ�, Parkinson’s UK, Parkinson’s Foundation, and patients, the PECPR exemplifies how meaningful partnerships between industry, patient groups, and people living with Parkinson’s can drive impactful outcomes.

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.

The PECPR was honored to have received the Made With Patients Award 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.

A New Initiative for Health Equity in Research and Development

This year also marks the launch of the Parkinson’s Health Equity in R&D Community Leaders Board by ��ֳ�. The goal is to ensure that people from underserved backgrounds living with Parkinson’s are better represented in clinical trials. By doing so, ��ֳ� aims to conduct clinical trials that more accurately reflect these populations, ultimately providing benefits to all patients.

The board’s objective is to create a platform where community leaders can share their real-world expertise and provide strategic guidance to ��ֳ�. Together, they aim to drive impactful initiatives across clinical programs, ensuring that equity and inclusion are integral to the way research and development operate.

A Future of Hope and Progress

This World Parkinson's Day, we celebrate the strides made in research, equity, and patient engagement—and we reaffirm our commitment to creating a better future for all people living with Parkinson’s. Initiatives like PECPR and the R&D Community Leaders Board show that equitable, inclusive collaboration isn't just a buzzword; it's the foundation of meaningful progress.

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’s remain central to everything we do.

Learn more about Parkinson’s

solutions

Comment:

Posted by Yliana Carolin…, 15 April 2025

Very important patology

138 Likes

From knowledge to action: empowering the MOGAD community

Andrea_Puletto — Wed, 09 Apr 2025 07:25:10 +0000

From knowledge to action: empowering the MOGAD community

Danielle Hartigh, Global patient engagement and advocacy

Andrea_Puletto Wed 09/04/2025 - 09:25

Living with Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD) presents unique challenges that can profoundly affect daily life. Approximately, 1.6-4.8 per million people annually are diagnosed with this rare autoimmune disease that mistakenly attacks the protective coating around nerve fibers, impacting the brain, optical nerve and spinal cord, which means initial symptoms and presentation can vary between patients, also making it difficult to recognize and diagnose. MOGAD results in visual disability or vision loss, motor control issues and cognitive strain, and without proper intervention, symptoms can worsen over time, making awareness and education even more important.

This MOGAD Awareness Month, we believe it is crucial to highlight how awareness and knowledge of the disease supports early diagnosis, empowers patients, caregivers and healthcare professionals to advocate effectively, and helps improve the quality of life of those affected.

The importance of early and accurate diagnosis

Early intervention is crucial to reducing the likelihood of MOGAD relapses and potential disability, which means that distinguishing MOGAD from other neurological disorders is vital for receiving appropriate care. MOG-IgG testing can rule out other conditions that present with similar symptoms like Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorder (NMOSD).

A precise diagnosis allows for targeted treatment and management strategies that can significantly improve patient outcomes. The MOGAD journey is unique for everyone, and disease management often requires a diverse team of healthcare providers, including physical therapists, neuro-ophthalmologists, and psychologists.

Patients as experts in their own condition

People living with MOGAD can work with their healthcare team to monitor symptoms, enabling them to identify trends and early warning signs of potential relapses, which allows for timely interventions that can prevent symptoms worsening. Additionally, through discussions of lifestyle preferences and goals, disease management can be optimized for individuals.

Living with MOGAD can sometimes feel isolating, especially when symptoms like fatigue, brain fog and pain go unnoticed or are misunderstood, leading many patients to often refer to MOGAD as an invisible disease. The condition can also impact mental health, leading to anxiety or depression. Caregivers can help by being available to listen and provide emotional and physical support.

��ֳ�'s Mission in MOGAD

At ��ֳ�, we are committed to supporting the MOGAD community through developing innovative solutions, working closely with the community and fostering a deeper understanding of the disease. One of our goals in 2025 and beyond is to give patients the confidence to better advocate for themselves, in both the diagnosis and disease management, to ultimately foster shared decision making between patients, caregivers and HCPs. Our mission is to provide the community with the resources and support they need to embrace knowledge as a superpower.

innovation

MOGAD neurology neuroscience

42 Likes

Innovating in neurology: ��ֳ�'s commitment shines at AAN 2025

Andrea_Puletto — Wed, 02 Apr 2025 08:31:25 +0000

Innovating in neurology: ��ֳ�'s commitment shines at AAN 2025

Donatello Crocetta, Global Rare Disease＆Rare Medical

Andrea_Puletto Wed 02/04/2025 - 10:31

As we prepare for the American Academy of Neurology (AAN) congress, we're excited to showcase ��ֳ�'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.

A focus on valuable solutions

At ��ֳ�, 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), ��ֳ� 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.

Showcasing innovation at AAN

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.

��ֳ� 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.

Our commitment to science and care

First and foremost, ��ֳ�’s 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.

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.

solutions

innovation epilepsy neurology

54 Likes

Our Commitment to Advancing Treatments for TK2d

Andrea_Puletto — Tue, 18 Mar 2025 07:47:15 +0000

Our Commitment to Advancing Treatments for TK2d

Fabian Somers, Patient Evidence

Andrea_Puletto Tue 18/03/2025 - 08:47

At ��ֳ� 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.

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.

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.

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.

Stay connected with us for updates on our progress and learn how we’re making a difference. Together, we can bring new possibilities to those in need.

solutions

TK2d Rare Disease neurology

87 Likes

More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies

Andrea_Puletto — Mon, 10 Feb 2025 09:50:16 +0000

More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies

Andrea Wilkinson, Global Epilepsy & Rare Syndromes

Andrea_Puletto Mon 10/02/2025 - 10:50

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 deficiency 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.

With International Epilepsy Day on 10 February 2025, followed closely by Rare Disease Day on 28 February, themed ‘More than you can imagine’, it’s 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.

Looking beyond seizures

Dravet syndrome (DS), Lennox-Gastaut syndrome (LGS) and CDKL5 deficiency disorder (CDD) 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.

These DEEs don’t end with the individual — 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.

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.

Although people’s 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.

Working together to address the non-seizure burden

At ��ֳ�, 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, enhance 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.

‘More Than You Can Imagine’ – A theme to remember

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 “epilepsy”, their complexities extend far beyond seizures. Recognizing these challenges – and addressing them – could change what is often an overwhelming diagnosis into a life supported by compassionate resources and initiatives.

We invite you to help us increase understanding of the broader impacts of epilepsy. Whether it’s 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’ll 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.

solutions

neurology epilepsy TK2d

85 Likes

Advancements in Epilepsy Research

Andrea_Puletto — Thu, 01 Aug 2024 11:25:23 +0000

Advancements in Epilepsy Research

Liesbeth François, Data and Translational Sciences

Andrea_Puletto Thu 01/08/2024 - 13:25

Although the field of epilepsy research is well-established, we have only just begun to scratch the surface of our understanding of more complex epilepsies. We are entering a period of disruption, where new breakthroughs and the integration of innovative technologies into drug discovery and development show promise in transforming epilepsy care. One area is ‘molecular hallmarks’ – molecular signatures that contribute to the presentation of complex epilepsies.

Discovering ‘molecular hallmarks’

At ��ֳ�, a key area of our research is focused on broadening targets for treatments. In a study published earlier this year, we identified well-known and new gene regulatory networks shared across different refractory epilepsies; we called these ‘molecular hallmarks’.i This research was the culmination of five years of collaborative work that has enabled us to start to advance our understanding of hard-to-treat epilepsies and opened new possibilities for drug-target discovery and development.

‘Molecular hallmarks’ are currently under study by our Early Development team who have mapped out a strategy for further research to potentially make the hallmarks targetable. The research targets include neuronal support and myelination, neuroinflammation and immune response, energy metabolism, and the brain extracellular matrix (ECM).

Targeting complex epilepsies

Epilepsy is more than seizures and we are continuing to uncover the vast complexities of the condition. ‘Molecular hallmarks’, therefore, offer potential additional targets for epilepsy treatments that go beyond seizure suppression, enabling us to target the underlying mechanisms of the most challenging seizure disorders. This shift represents a move away from conventional treatment methods, and into research that focuses potentially disease modifying therapies.

This ‘molecular hallmark’ research is an important part of our epilepsy strategy and provides a data-driven framework for the further identification and intervention of further dysregulated biological pathways.

Ultimately, our goal at ��ֳ� is to develop new treatment options, based on these scientific discoveries, that can attempt to enhance patient outcomes.

The role of computational biology

Epilepsy is not a one-size-fits-all condition. Each person’s experience of living with epilepsy is unique and given what we know so far about the complexity of epilepsies, there is a clear role for computational biology in epilepsy research. Through analysis of the expression profiles of refractory epilepsies, we can start to understand global biological mechanisms that are impacted in refractory epilepsies. Our research continues to drive our understanding of the human pathobiology of different refractory epilepsies to support our aim to identify new disease modifying treatments for patients. This research aims to help us comprehend the mechanisms underpinning epilepsy and enable the development of new therapies for refractory epilepsies.

The future of research

Everything we do starts with people and families living with epilepsies, helping them achieve their ideal and maximize their life opportunities. Looking to the future as we advance our epilepsy research, we recognize that those living with complex epilepsies will continue to rely on chronic, symptomatic anti-seizure medicines, and we continue our research to help improve outcomes with the symptomatic approaches available to patients today. However, we constantly need to push our approaches to secure the best outcome for those we serve. Molecular hallmarks and master regulators provide invaluable insights and open new avenues for precision medicine and new treatments that address the unmet needs of people living with epilepsies.

innovation

epilepsy neurology Neurology & Therapy

265 Likes

Supporting International CDKL5 Day

Andrea_Puletto — Mon, 17 Jun 2024 09:13:13 +0000

Supporting International CDKL5 Day

Nick Francis, Neurology Communication

Andrea_Puletto Mon 17/06/2024 - 11:13

Every June the CDKL5 community comes together to recognize CDKL5 disorder, and promote awareness efforts, research, collaboration, and fundraising.

June 17 is International CDKL5 Day, in memory of Glyn Boltwood, whose life and legacy was directly responsible for the medical and scientific community discovering CDKL5 Disorder in 2004.

CDKL5 deficiency disorder – a Developmental and Epileptic Encephalopathy (DEE) - is a genetic disorder that causes seizures, developmental delay, and severe intellectual disability. Seizures typically begin within a few months after birth and are difficult to control with medications. Most children have 1 to 5 seizures every day. Other symptoms include problems with sleeping, feeding, and teeth grinding. Gastrointestinal symptoms are also common and may include constipation, reflux, and air swallowing.

About 1 in 5 children use a feeding tube. CDKL5 deficiency disorder occurs more often in females than males, and males usually have more severe symptoms. This disorder is caused by a change (pathogenic variant) in the CDKL5 gene that is usually not inherited from either parent (de novo). It is an X-linked dominant disorder. CDKL5 deficiency disorder was once thought to be a variant of Rett syndrome but is now considered a separate disorder.

For more useful resources and information, visit:

https://rarediseases.info.nih.gov/diseases/12173/cdkl5-deficiency-disorder

about ucb

neurology CDKL5 seizures Developmental and Epileptic Encephalopathy

246 Likes

Innovating in Epilepsy

Andrea_Puletto — Fri, 14 Jun 2024 11:19:04 +0000

Innovating in Epilepsy

Mike Davis, Epilepsy & Rare Syndromes

Andrea_Puletto Fri 14/06/2024 - 13:19

In recent years, epilepsy research has evolved from focusing solely on symptomatic control of seizures to investigating the underlying pathologies, aiming to develop disease-modifying and ultimately curative therapies.

At ��ֳ�, we understand the importance of staying at the forefront of innovation, and prioritizing research and development within the dynamic category of epilepsy - principles that have built our 30-year heritage in this area. To ensure we are a part of this evolution, we need to advance and progress. Our people-first approach focuses on three areas of development:

Driving innovation in science
Partnering with patients to advance the ecosystem
Elevating the standard of care for all people living with epilepsies

We are entering a rapid period of disruption where we need to address multiple unmet needs of specific patient populations through evolving modalities, targets, and care delivery. To achieve this, we need to adopt new approaches that employ emerging technologies and require capabilities beyond anything currently present in the market.

We are focused on the development of an extensive future epilepsy portfolio, made up of targeted, precision medicines, focusing on the entire spectrum of epilepsies. As well as continually improving the outcomes of the symptomatic approaches, available to patients today.

Advancing symptomatic care

Our research focuses on developing a better understanding of the prevention of seizures and the underlying mechanisms of the most challenging seizure disorders. We are advancing distinct solutions across many different epilepsies for specific patient populations, and have several early discovery phase research projects, involving both small molecules and gene therapies, that are currently active.

Our goal is to disrupt this space by advancing solutions across many different domains and dimensions of the epilepsies. This starts with our current products where we continue to research their impact on non-seizure outcomes relating to cognition, behavior, emotional development, and sleep architecture; neurodevelopment delays; corollary links to other neurodegenerative diseases; Sudden Unexpected Death in Epilepsy (SUDEP) and all-cause mortality.

Disease modification

Teams from across ��ֳ� are envisioning a next generation of therapies that will take epilepsy care beyond symptomatic treatments by targeting the underlying mechanisms that lead to both seizure and non-seizure effects of the diseases and syndromes we aim to treat and opening the door to disease modifying and curative solutions. Working together, we are exploring fundamental disease etiologies across the epilepsies, uncovering root causes of monogenic epilepsies, and targeting the pathobiology of structural epilepsies, such as the role neuronal support and myelination, neuroinflammation and immune response, energy metabolism, and the brain extracellular matrix (ECM) play in the refractory complex epilepsies.

The role of AI

Technology and AI are having an increasingly significant role in epilepsy research and development - for instance, to help patients and families better characterize and manage their seizures. Our technology-based partnerships with Eysz and NextSense introduce new ways to track brain activity outside traditional EEG monitoring. Furthermore, our R&D teams continually harness ��ֳ�’s deep institutional knowledge of the pathobiology of epilepsies. Using advanced analytics, we leverage AI resources to strengthen our discovery and development efforts. This includes identifying mechanisms and developing disease models through to prioritizing potential targets.

Broadening access

At ��ֳ�, we believe that all patients who need our treatments should have access to them now and in the future. Health inequities are a challenge in bringing innovations to people living with epilepsies and elevating their standard of care. We’re working to address this through sustainable approaches to reach the historically underserved people of lower-middle-income countries and address their unmet needs. For instance, in Rwanda, we have recently worked with the government to enable those living with epilepsy to have access to ��ֳ� treatment.

Health equity is also about deepening our local connections in the communities where we operate. This starts with understanding how diverse patient groups experience care and treatment, to better understand where social determinants of health may have exacerbated health inequities among historically underserved communities and define targeted approaches.

Future thinking

Looking ahead, we expect to see the continuing emergence of treatment modalities, delivery technologies, and hidden insights into underlying pathobiology. This has the potential to advance the development of disease-modifying solutions and support the progress toward curative medicine options for those living with epilepsies. Ultimately, our goal at ��ֳ� is to continue to innovate across the entire spectrum of epilepsy care – we want to treat the treatable and cure the curable.

innovation

Neurology & Therapy epilepsy neurology

261 Likes

Making a difference together - First ��ֳ� Pan-European Meeting on Developmental and Epileptic Encephalopathies (DEEs)

Andrea_Puletto — Fri, 17 May 2024 14:14:07 +0000

Making a difference together - First ��ֳ� Pan-European Meeting on Developmental and Epileptic Encephalopathies (DEEs)

Francesco Chiaromonte, HCP Engagement

Andrea_Puletto Fri 17/05/2024 - 16:14

At ��ֳ�, we believe that providing opportunities for collaboration, discussion, and knowledge exchange for healthcare professionals can help make a real difference in improving the care and treatment of people living with serious neurological conditions, such as epilepsy. For this reason, we recently launched a new European meeting series for healthcare professionals, entitled: "Make the difference together".

The first two-day meeting in this series took place in March, with more than 35 Neurologists and Neuropaediatricians from across Europe in attendance. The topic of discussion was Developmental and Epileptic Encephalopathies (DEEs) – a key area of focus for ��ֳ�.

On the first day, delegates highlighted the importance of a patient-centered approach to the management of DEEs, in addition to advances in research and their impact on clinical practice. Following this, clinical case studies of people living with Lennox-Gastaut syndrome were discussed in small groups; the various cases showing just how complex these diseases are. The intensive and practical exchange among the participants resulted in many hands-on considerations on how to improve care.

The second day of the meeting began with a discussion about the opportunities and challenges of transitioning patients from pediatric to adult care. Discussion then turned to the topic of optimizing the management of DEEs. Emphasis was placed on the importance of individual action plans and prioritizing families, who often take on a large share of home care. The event concluded with a group discussion of complex clinical case studies of people living with Dravet syndrome. The results of these constructive and practice-oriented group discussions were then compiled and discussed again in the plenary session.

Our first pan-European meeting "Make the difference together" confirmed once again that these deep discussions are extremely valuable in helping improve patient care, and the positivity of the meeting was reflected in the voices of the participants.

We would like to thank all the participating experts for their contributions, which greatly enriched the event, and we thank them for their commitment to people living with epilepsy.

The next event will take place in June (21-22), in Prague. Do please get in touch if you want further information.

innovation

neurology epilepsy Pan-European Meeting on Developmental and Epileptic Encephalopathies DEEs

Comment:

Posted by Heidi Henninger , 21 May 2024

Thank you ��ֳ� for your leadership in this important area. Let us continue to move forward together!

345 Likes

New approaches in epilepsy research

Vanco Vlastimil (��ֳ� S.A.) — Tue, 13 Jun 2023 11:01:22 +0000

New approaches in epilepsy research

Stefanie Dedeurwaerdere, Epilepsy Discovery Research

Vanco Vlastimi… Tue 13/06/2023 - 13:01

At ��ֳ�, we have been leaders in the research and development of treatments for epileptic seizures for more than 20 years. In 2022, more than 2.6 million people living with epilepsy benefited from our anti-seizure medications, and our commitment to providing new solutions for those in need continues. We are working towards a future where we hope to impact the underlying causes of the epilepsies with disease modifying therapies which can change the course of the disease.

It is important to recognise that there are multiple types of epilepsy. In fact, we now more commonly refer to epilepsy as the ‘epilepsies,’ indicating that it’s not really a single disease. In addition, for many people — particularly those living with certain, rare epileptic syndromes — seizures are not the only impactful symptom.

As an industry, we've been very focused on seizures, which for so many patients, continues to be top of mind. But it’s essential that, in our focus on seizure suppression, we don’t neglect what changes in the brain are often underneath those seizures.

When we understand the root cause of certain epilepsies, it opens opportunities to target the underlying mechanisms that impact these diseases, through new treatment approaches.

To further increase our understanding, we've been collaborating with universities on building one of the largest analyses of human brain tissues from epilepsy patients in the world, including > 200 samples. This in-depth study allows us to really comprehend the world of epilepsies as a global brain map, to quantify fully the different subtypes of epilepsy, understanding what they may have in common and what could be unique to specific conditions.

For complex epilepsies, where mechanisms are less understood, the situation is more challenging. Here, we are building on genetics to help understand universal disease mechanisms across the epilepsies.

In addition, we have also developed an artificial intelligence computational framework in collaboration with various academic partners to investigate disease mechanisms and processes that helps us to identify novel areas for future therapeutic entry points.

Our digital innovations are also key in allowing our patients to have a louder voice, to feel more empowered, and to know and understand their disease more thoroughly. The combination of more diverse treatment options and a more informed patient population will help bring us in an era where the treatments will be much more personalized, impacting patients’ lives in a more significant way.

Our commitment to epilepsy research has never been stronger, and as the science advances so does our curiosity. We are hopeful for the future, and we will learn and refine our thinking as we progress.

about ucb

epilepsy neurology patients research innovation

525 Likes

neurology

World Parkinson’s Day 2025: Driving Change Through Collaboration

The PECPR Initiative: A Model for Patient Engagement

A New Initiative for Health Equity in Research and Development

A Future of Hope and Progress

Leave a Comment

From knowledge to action: empowering the MOGAD community

The importance of early and accurate diagnosis

Patients as experts in their own condition

������ֳ�'s Mission in MOGAD

Leave a Comment

Innovating in neurology: ������ֳ�'s commitment shines at AAN 2025

A focus on valuable solutions

Showcasing innovation at AAN

Our commitment to science and care

Leave a Comment

Our Commitment to Advancing Treatments for TK2d

Leave a Comment

More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies

Looking beyond seizures

Working together to address the non-seizure burden

‘More Than You Can Imagine’ – A theme to remember

Leave a Comment

Advancements in Epilepsy Research

Discovering ‘molecular hallmarks’

Targeting complex epilepsies

The role of computational biology

The future of research

Leave a Comment

Supporting International CDKL5 Day

Leave a Comment

Innovating in Epilepsy

Advancing symptomatic care

Disease modification

The role of AI

Broadening access

Future thinking

Leave a Comment

Making a difference together - First ������ֳ� Pan-European Meeting on Developmental and Epileptic Encephalopathies (DEEs)

Leave a Comment

New approaches in epilepsy research

Leave a Comment

��ֳ�'s Mission in MOGAD

Innovating in neurology: ��ֳ�'s commitment shines at AAN 2025

Making a difference together - First ��ֳ� Pan-European Meeting on Developmental and Epileptic Encephalopathies (DEEs)