Charter for the FSHD Champions
- To form a voluntary, informal federation of all national and international organizations funding FSHD research.
- 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.
- 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.
- 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.
- 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.