FSHD Champions

FSHD Champions is a voluntary, informal alliance of all national and international organizations advocating for FSHD patients and funding FSHD research.

Our Mission

  • To promote communication and collaboration between FSHD researchers and FSHD research organizations/charities.
  • To have the opportunity to work together to fund research projects that are beyond the scope of the individual organizations.
  • To work together to advocate for greater FSHD research funding from organizations such as the National Institutes of Health in the United States, European Union and the Muscular Dystrophy Associations/charities worldwide.
  • To work collaboratively to promote International awareness of Facioscapulohumeral Muscular Dystrophy and the need for FSHD research funding.
  • To share expertise and best practices for the overall promotion and success of the individual FSHD research initiatives.
  • To work towards the availability of an affordable and effective treatment for FSHD; and to advocate for reimbursement of such treatments.