Charter

Charter for the FSHD Champions

Purpose:

  • To form a voluntary, informal federation of all national and international organizations funding FSHD research.

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.

Governance

  • FSHD Champions¬†is a voluntary, informal federation of FSHD-focused research funders. The Group has no constitution nor bylaws. It has no budget nor specific authorities.
  • FSH Society and FSHD Stichting will initially serve as “convenors”. Convenors for the upcoming year will be selected at each annual meeting.
  • A working group will formed to implement agreed actions.
  • Information will be openly shared to the benefit of the Group members.

Meetings

  • A formal physical meeting at the occasion of the American Society for Human Genetics annual conference, the day after the FSH Society International Research Consortium meeting with researchers.
  • The working group will meet using teleconferencing and webinars once a month.
  • Ad hoc teleconference meetings will be called only when necessary.

Initial activities

  • Preparation and publication of a white paper, defining FSHD.
  • Taking inventory of past and current funded projects.
  • Preparing a list of the most important areas for research to focus on.
  • Sharing project application forms.

Potential areas for future cooperation

  • Co-funding of research projects.
  • Agreeing on a plan to make better use of the scarce funding resources.
  • Create a network of patient registries adhering to a minimum set of fully harmonized measures.
  • Sharing good practice in fundraising. Possible cooperation in fundraising.
  • FSHD Advocacy and lobbying.
  • Ensuring the establishment of internationally harmonized standards of care, outcome measures.
  • Ensuring an internationally acceptable way to establish trial readiness.
  • Paving the way to reimbursement and availability of an FSHD effective treatment worldwide, and to ensure that a treatment that has a positive effect will receive a broad label.

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