Lack of recognition should never become a patient’s burden.

Drawing on her own experience of living with Visual Snow Syndrome, Maartje founded Visual Snow Europe to help turn a lack of recognition and understanding into meaningful change. She works to strengthen the patient voice, increase awareness and build meaningful connections between people living with VSS, healthcare professionals and researchers across Europe.

Through greater awareness, understanding and scientific research, we aim to build a future where people with Visual Snow Syndrome are better understood and supported.

Vincent is the co-founder and secretary of Visual Snow Europe. Having lived with Visual Snow Syndrome since childhood, he understands firsthand how profoundly the condition can affect everyday life and how challenging the search for answers can be. Drawing on his personal experience, he is committed to providing reliable information, fostering international collaboration and advancing scientific research. His goal is to help people with VSS gain greater recognition, understanding and hope for the future.

All people with VSS deserve recognition and should be able to access means of reducing its impact.

When Frank first developed symptoms of Visual Snow Syndrome, his experiences were misunderstood and initially dismissed as psychosomatic. His first request for a second opinion was also rejected. After several months, he finally received a diagnosis after Visual Snow Europe helped direct him to a knowledgeable doctor. These experiences motivated him to support an organisation that helps people with VSS feel heard, understood and taken seriously. He is particularly committed to raising awareness and helping secure funding for further scientific research, recognising that there is still a long way to go towards effective treatments and a cure.

Everyone with Visual Snow Syndrome deserves access to reliable information, answers and a timely diagnosis.

Originally from Belgium and currently living in Australia, Pieter has a background in International Business Management and has been living with Visual Snow Syndrome for three years. Through his own experience, he understands how difficult it can be to find reliable information and obtain a diagnosis. Drawing on his international experience and personal involvement, he aims to raise awareness, improve access to trustworthy information and connect people across borders.