To help patients and their families overcome challenges together, we are working toward a society where individuals living with FSHD and their families can live with peace of mind. Our activities include the following:

• Providing accurate and reliable disease information from the patient's perspective

• Supporting patients to continue treatment with hope by delivering the latest research advances and treatment development information

• Providing opportunities for dialogue and connection where patients and families can share experiences and feelings

• Promoting broader societal understanding of the disease and fostering accurate recognition of patient symptoms

• Advancing Patient and Public Involvement (PPI) to ensure active participation of patients and citizens in treatment development

​

These activities are supported by your generous donations.

We sincerely appreciate your warm support.