Community Advisory Board

Community Advisory Board

EFNA’s Community Advisory Board (CAB) is a group comprised of 12 dedicated patient advocates who will receive specialised training in advocating for both neurology and their specific disease areas.

Over the course of 2024, the Community Advisory Board will participate in a series of online and in-person workshops. These workshops will fall under the themes of: Industry Engagement, Science/Clinical Engagement, and Political Engagement.

Together with the core EFNA team and board, they will have the opportunity to engage with stakeholders such as policymakers, industry, researchers and clinicians, representing the needs and priorities of patients with neurological conditions to ensure they are adequately prioritised.

In addition to capacity building within the neurology patient community, a major benefit of this program will be to elevate and apply patient experience and expertise to processes spanning from ‘concept to clinic’ and place patients on an equal footing among neurology stakeholders in Europe.

Meet EFNA’s Community Advisory Board:

Anna Revilla Brunol

Anna Revilla Brunol, Belgium

“As someone living with multiple sclerosis, joining the EFNA CAB provides me with the chance to actively contribute to the advancement of policies aimed at enhancing the lives of individuals with neurological conditions.”

Cathy Molohan

Cathy Molohan, Germany

“As an Irish person resident in Germany and living with Parkinson’s Disease, I strongly believe that we need to raise our voices at the European level to improve the situation of all Europeans living with a chronic neurological disease.”

Henk Lindeman

Henk Lindeman, Netherlands

“Neurological disorders are so significant, frequent, and disabling. They require an international European approach. I joined the CAB hoping to achieve that European countries will collaborate in preventing and treating neurological diseases.”

Lorraine Lally

Lorraine Lally, Ireland

“I joined the EFNA Community Advisory Board to be a voice for the lived experience as a person born prematurely with life long neurological challenges and to shape the priorities that are taken on in campaigning and planning. I would hope to achieve an awareness of the needs for those who are living with neurological conditions so that there may be an improvement to the quality of life for children and adults with epilepsy.”

Saija Ristolainen-Kotimäki photo by Susanna Kekkonen

Saija Ristolainen-Kotimäki, Finland

“I want to make an impact at EU and national level and raise awareness of the burden of neurological conditions. I hope to learn to make better use of my decades of real-life experience of the role of a carer in a family with a terminal, hereditary disease that affects one generation to the next. I believe that my years of work as a patient association and rare disease activist has given me a broader perspective to look at the challenges the diseases bring and the solutions they require.”

Andra Bria

Andra Bria, Romania

“I joined the EFNA Community Advisory Board driven by a passion to amplify the voice of neurological care partners. By sharing my experiences, I hope to encourage more awareness, resources, policy support and research for those with neurological conditions and offer support to others who find themselves on a journey of caregiving. By working together, we can make a global effort to alleviate the burden surrounding neurological disabilities.”

Leila Ali

Leila Ali, Italy

“As a neurology patient advocacy group representative, my mission is to ensure that every individual affected by a neurological condition receives the personalised care and therapeutic chances they deserve. I believe in preserving patients’ rights throughout clinical and research activities, while actively combating social stigma and promoting their active involvement in therapeutic plans. By fostering a strategic movement for policy change and encouraging patient involvement in research, we can pave the way for a brighter, more inclusive future in healthcare and neuroscience.”

Lorraine Duffy

Lorraine Duffy, Ireland

“As a person living with an acquired brain injury (ABI) I will advocate for better supports for brain injury survivors, including equal access to a specialised neuro-rehabilitation service, disability services, primary care services and mental health services. As a researcher I believe in the inclusion of lived experience in brain injury research so that survivors’ needs can be heard, understood and met by policy makers. I view EFNA’s Community Advisory Board as a platform which can empower its members to represent the needs and priorities of patients with neurological conditions.”

Gracemarie Bricalli

Gracemarie Bricalli, Switzerland

“Suffering from a rare debilitating neurological disease myself, I have first-hand experience of the devastating effects they can have on a person’s health and quality of life. I joined the EFNA Community Advisory Board to advocate for the ‘missing millions’ – for the improved health of millions of people missing from school, from work, and from everyday activities due to neurological illnesses – and for the millions missing in financial funding to advance biomedical research to find biomarkers and cures for those illnesses where none currently exist.”

Mary Troup

Mary Troup, Scotland

“I chose to join EFNA’s CAB because I believe that people have the right to be partners in their own health care and to be treated with respect and dignity. I want to contribute my time, energy and knowledge to help people in the neurological community to achieve this, to have access to the highest standard of care and support, to be well informed, and to maintain the best quality of life and wellbeing.”

Nancy van Hoylandt

Nancy Van Hoylandt, Belgium

“Becoming a member of the EFNA Community Advisory Board offers me the opportunity to get involved in advocacy for ME/CFS and neurology patients allowing me to use my patient experience in a constructive and meaningful way.”

Chantel Fouche

Chantel Fouche, Belgium

“As a woman living with ADHD I am looking forward to learning more from my fellow neurological advocates. Continue to educate with evidence, empowerment, encouragement & engagement with stakeholders shaping policies and strategies!”

EFNA’s Community Advisory Board is kindly supported in 2024 by Novartis and Lundbeck
Novartis
UCB
Lundbeck