FSHD Connect Europe patient meeting 2025

About FSHD Connect Europe

FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. We hope to see you there!

Friday June 13th

We kick off the weekend with a welcoming reception. The registration desk will be open, and after receiving your information package, you’ll have the chance to meet and (re-)connect with other patients, researchers, and healthcare providers while enjoying drinks and finger foods.

Saturday June 14th

The plenary session, ‘Living with FSHD’, will kick off with an inspiring keynote presentation by Marion Sellenet (visual artist) and Pierre Laurian (DUX Foundation), who will share their personal journeys of living with FSHD. Following this, Alexandra Belayew will provide an engaging summary of key highlights from the FSHD International Research Conference, offering clear and accessible updates on the latest research and advancements in the field.

In the afternoon, you will have the opportunity to participate in a variety of engaging and interactive workshops. A detailed overview of each workshop is provided below, and you can select your preferred workshops through the registration form. Advance registration is required.

If you are looking to connect with others beyond the workshops, the FSHD Café offers a welcoming space for you, your partner, or family members to meet others, exchange experiences, and enjoy casual conversations. Feel free to drop by at any time throughout the afternoon.

In the evening, unwind and make meaningful connections over a delightful dinner at the hotel restaurant, providing plenty of opportunities for networking and conversation.

Sunday June 15th

The focus of the morning will be on the session, ‘Clinical trial readiness’. Lucienne Ronco will provide an overview of ongoing clinical trials in FSHD. You will be informed on how to prepare for trial participation and why it’s so important by Umesh Badrising. Furthermore, Amanda Hill will update us on Project Mercury, a global initiative offering a worldwide perspective.

Detailed program will be announced soon this website.