World Parkinson’s Day 2025: Driving Change Through Collaboration

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

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

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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

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neuroscience

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

neuroscience

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

��ֳ�'s Mission in MOGAD