Help Shape the Future of FSHD Care: Your Voice Matters
People living with FSHD are invited to take part in an international survey on advance care planning and palliative care.
Living with FSHD often means thinking about more than muscle weakness. As the condition changes over time, you and your family may face decisions about managing symptoms, treating an illness that comes on suddenly, and what kind of care you would want in the future. Right now, there is very little research or guidance to help people with FSHD through these decisions.
FSHD Global is working with FSHD Europe on an international project to change that, and would like to hear from you.
Why now?
As part of this project, FSHD Global will host an expert workshop in Sydney, 3-5 November 2026. It will bring together people living with FSHD, clinicians, researchers and other stakeholders to identify needs, priorities and opportunities to improve care.
They want that workshop to be shaped directly by the experiences and perspectives of people living with FSHD. That is why this patient survey was developed, in collaboration with Radboud University Medical Centre in the Netherlands and FSHD Stichting.
FSHD Europe has already shared the survey across European countries. They are now inviting people in the remaining Project Mercury countries (including Canada) to take part, so that the discussions in Sydney reflect a broader international perspective. Your answers will help them see where more research, guidance and resources are needed.
What do these terms mean?
Advance care planning is the process of thinking about, and talking through, your future healthcare wishes and personal care preferences. It helps the people close to you, and your healthcare team, understand what matters to you if difficult decisions ever need to be made.
Palliative care is not just end-of-life care. It focuses on improving quality of life by preventing and relieving suffering, and it supports patients and their families at any stage of a disease. For people with a progressive condition like FSHD, it can help with living well: Managing symptoms, addressing quality-of-life concerns and supporting families through periods of serious illness.
What the survey asks
The survey aims to understand:
- What matters most to you about your current and future care
- What your experiences of care have been so far
- What help and support you might need as your condition changes
What to expect
- It’s anonymous. The survey does not ask for information that could directly identify you.
- It’s voluntary. You choose whether to take part.
- It takes about 20 minutes. Because responses are anonymous, you can’t save your progress and return later, so it helps to set aside a quiet moment to finish it in one sitting.
- It’s secure. It is completed in a secure online environment.
Ready to take part?
Take the survey here
You can read more about why this research is being done on the FSHD Global website.
If you have any questions or comments, you can contact the research team at FSHDonderzoek@radboudumc.nl.
Thank you for considering taking part. The experiences of people living with FSHD will be at the centre of the conversations in Sydney, and every response helps.