FSHD Japan is a patient organization for facioscapulohumeral muscular dystrophy (FSHD).
We are committed to working together with patients and their families to advance research and support efforts so that a cure can be found as soon as possible and everyone can live their best life for as long as possible.
> For those diagnosed with facioscapulohumeral muscular dystrophy (FSHD)
News
Activities
The FSHD Japan primarily engages in the following activities.
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Patient meetings
We create an environment where patients and their families can support each other and avoid isolation.
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Online and offline seminars
We regularly host lectures featuring specialists, researchers, and patients with the same condition.
Past seminars can be viewed here
Information dissemination about FSHD
We provide information on medical care, health, welfare systems, and other relevant topics.
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Awareness-raising activities
We advocate for the improvement of quality of life (QOL) for patients and their families by engaging with society.
Joining a patient association
Our patient association is currently recruiting new members. Anyone who is a patient with facial, shoulder, and upper arm type muscular dystrophy, or a family member of such a patient, and who agrees with the purpose of this association is welcome to join.
FSHD Japan is affiliated with the Japan Muscular Dystrophy Association (a registered nonprofit organization) as a disease-specific organization and also serves as the FSHD subcommittee. The association is run by patients with the same condition who support one another, and has been actively operating since 2019.
About the Patient Meeting
The purpose of this group is to facilitate communication among patients with facioscapulohumeral muscular dystrophy (FSHD). Our condition is considered a relatively mild form of the disease, and there are few opportunities for patients to meet and interact with one another. Many patients are not members of the Japan Muscular Dystrophy Association.
Therefore, we established this group with the goal of creating a space where everyone (including those not affiliated with the Japan Muscular Dystrophy Association) can participate, share information, and connect with one another. Currently, we primarily communicate through a Facebook group page. We encourage you to join the Facebook group. (Participation is limited to patients and their family members or caregivers.)
Additionally, this page was created to provide information about FSHD and to invite those who are not patients to learn more about the condition and attend events. We appreciate your support and cooperation.
Together with FSHD patients around the world
FSHD Japan is a group that collaborates with patients, researchers, and related organizations such as the Japan Muscular Dystrophy Association to disseminate information, and actively involves those involved in basic research and clinical practice.
We attend international conferences where FSHD patient associations from around the world gather, exchange information with patients and medical professionals from various countries, and share the latest information on rapidly developing treatments with FSHD patients in Japan.
Additionally, we regularly hold “patient meetings” as part of our efforts to provide support for daily concerns, lifestyle-related issues, empathy, and mental health care. These meetings create opportunities for patients to gather and also include educational sessions on FSHD.
World FSHD Day
June 20th is World FSHD Day, a day dedicated to raising awareness about facioscapulohumeral muscular dystrophy (FSHD).
This initiative was started by overseas FSHD patient organizations.
In Japan, FSHD patient organizations hold events around June 20th to gather patients from across the country.
As the date approaches, why not join us in raising awareness about FSHD?
