Founded in 2024, FSHD Finland is internationally oriented and actively engaged in networking, peer support, and knowledge sharing. Board members Lauri Pirinen and Lora Chun are also involved with FSHD Europe.
Together with Rami Jokinen, author of the article, they shared their personal experiences during the FSHD Europe Connect Event 2025 in Amsterdam. Rami reflected on the sense of recognition among patients: “It felt like looking in a mirror.” His humor was partly saved by the warm foot baths at the hotel.
Looking Ahead
The group expressed their wish to organize a similar event in Finland in the future, ideally in collaboration with the Finnish Association for Neuromuscular Disorders. There is also a growing need for more clinics in Finland conducting FSHD-research, so that patients can more easily participate in studies.
Read the full article “Alive in Europe” and be inspired by Finnish determination and international collaboration.