FSHD Japan is a patient association in Japan for facioscapulohumeral muscular dystrophy (FSHD).

We are a group of patients and their families who have come together to continue our activities. We hold online seminars and exchange meetings, connect with FSHD patient groups around the world, and strive to create a better environment for everyone.

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A diagnosis can be a difficult reality to face. Both patients and their families have walked this path before. But you are not alone. There are now various sources of information, ways to alleviate concerns and hardships, and a community where you can share your experiences. We know that many FSHD patients around the world are living their lives authentically. We also know that numerous researchers and companies are dedicated to FSHD research and the development of treatments. The environment surrounding FSHD is completely different from what it was 10 years ago.

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We are working hard to contribute to the present and a hopeful future by providing information and creating opportunities for connection among FSHD peers facing the same circumstances in this era. By joining the patient association, you will receive event notifications and news about clinical trials and research via email. We also share information on social media, so please follow us.

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We also kindly ask you to consider registering as a patient (Remudy) for future new drug development. We are available to answer any questions you may have about the registration process. Please feel free to contact us.

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＞Join FSHD Japan

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＞Patient registration (Remudy) 

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＞Social Media

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​※The patient association is an organization run by people with FSHD.

※Patient registration (Remudy) is a system where medical research institutions collect, analyze, and manage data from FSHD patients in one centralized location.