“After living with multiple sclerosis for over 20 years, I’ve gained valuable insights that combine both personal experience and scientific knowledge. It’s an exciting time for persons  living with neurological conditions to make our voices heard in European policy. Working together with healthcare professionals, researchers, and policymakers is key to making a real difference. I believe the role of dedicated ambassadors is significant in unlocking this potential. That’s why I’m truly honoured to have the chance to be a part of the Community Advisory Board.”

“As President of the Dravet Syndrome Foundation Spain, I advocate for those affected by Dravet syndrome, a rare and severe form of epilepsy. My personal experience with my child’s diagnosis drives my commitment to patient advocacy. Joining the EFNA Community Advisory Board allows me to amplify the voices of those with neurological conditions at a European level, believing in the transformative power of patient organizations.”

“As a practising Sikh, we have a saying: “SEVA,” which is a fundamental concept in Sikhism referring to selfless service performed without any expectation of reward. Since being diagnosed with Parkinson’s, I have been volunteering my time, alongside my full-time work, to help others with this condition. I reach out to all communities, raise awareness within the U.K. government to bring about change, and work to remove stigma within ethnic minorities. Being an advocate for EFNA’s Community Advisory Board will further reinforce bringing about change.”

“As a member of a Spanish family affected by Huntington’s disease, being part of the EFNA CAB gives me the opportunity to continue working, this time from a European context, to improve care and give a voice to this unique community of patients suffering from this minority disease, within the complex world of neurological diseases.”

“For me, joining CAB is about building bridges to drive meaningful change for people living with neurological conditions. As a person with living with Multiple Sclerosis, I believe change is possible when we take action and encourage more patients to participate in the decision-making process.”

“Being a 39 year old with Young Onset Parkinson Disease at already Advanced Stage that if not scientific breakthroughs in available therapies and funding to have it accessible would be a crippled, jobless, disease-eaten man. Thanks to the people around me, their support and unwanted discovery of unsuspected iron will to fight back for as long as possible using against Parkinson’s what he takes from me… my brain.”

“Being selected to join the EFNA Community Advisory Board 2025 is a true honour! I aim to give stroke survivors a powerful voice, because I believe that no decisions should be taken about us without our opinion and patient expertise. I hope to learn how to make better use of my advocacy skills, so I can increase a strategic movement for cardiovascular health policy change.”

“Awareness is key. That’s my motivating power for becoming a member in EFNA’s Community Advisory Board. I have been advocating for chronic pain patients, as the president of Pain Alliance Europe, many of whom live with neurological conditions for years. I have also lived with an undiagnosed neurological condition for many years, ending up with a poor quality of life. Because I was not aware enough. There’s a lot to be done. I want to help patients, through EFNA’s platform, to get more empowered. And I want people to know more about chronic pain and neurological conditions. You cannot actually see them. But they are there. ”

“I joined the EFNA Community Advisory Board with the aim to achieve improvement in quality of life for everybody living with a neurological condition.

As a person with acquired brain injury after a stroke I am handling many challenges everyday. My goals is to use these experiences to improve therapeutic possibilities, understanding, support and possible cures for neurologic disabilities.”

“As a person with lived experience a dedicated advocate and changemaker in healthcare, education, policy change and research particularly with neurological conditions such as ADHD, Autism, Dyslexia, Dyspraxia, I am passionate about fostering understanding, promoting equality, and ensuring the voices of marginalised communities are heard, prioritised, and acted upon. My mission is to drive meaningful change for those navigating the challenges of complex health conditions for all individuals such as hypermobility with (SEDSConnective and) the CAB at EFNA.”

“I am a final-year Neurology resident in Kosovo and an EAN Brain Health Ambassador, with a professional journey that began in the pharmaceutical industry at Roche, where I introduce“d the neuroscience portfolio in Kosovo. Transitioning to clinical practice, I have focused on improving the treatment landscape for people with multiple sclerosis. Having had two family members affected by neurological disorders, I deeply understand the challenges faced by both patients and carers. Currently, I collaborate with national and international partners to advance the Brain Health Initiative locally and regionally. As a member of EFNA’s Community Advisory Board, I am committed to amplifying the patient’s voice and contributing to policies that prioritize brain health.”

“Three years ago, my family was devastated by discovering our father had Huntington’s Disease. I do not have Huntington’s Disease but in the last three years I have become all too familiar with severe lack of services here in Ireland, especially in relation to Neurological services. I advocate for Huntington’s patients at local and governmental level as a voluntary Board Member of the HDAI and closely follow the work that the Neurological Alliance of Ireland do in advocating for services.“

“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.”

“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.”

“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.”

“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.”

“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.”

“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.”

“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.”

“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.”

“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.”

“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.”

“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!”