FD/MAS Alliance Seeks Community Members to Serve on its Patient Advisory Council
The FD/MAS Alliance Patient Advisory Council (PAC) is made up of patients and caregivers living and caring for people with fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Members will assist the board of directors and staff in:
- Advising the FD/MAS Alliance on future directions for patient support programs and patient-related policies
- Serving as an FD/MAS Alliance ambassador, encouraging FD/MAS community members to participate in FD/MAS Alliance initiatives
- Spreading accurate and empowering information regarding FD/MAS consistent with FD/MAS Alliance messaging
- Guiding the organization in inclusive outreach and engagement through diversity, equity, inclusion, and accessibility initiatives
Members are accepted through an application process and will serve for a three-year, renewable term starting on July 1st. Members will:
- Attend four meetings a year, including an annual orientation
- Participate in at least one FD/MAS Alliance initiative annually (example: write a blog post, hold a fundraiser, meet with congressional staffer, register as a Team FD/MAS rider, participate in Awareness Week planning, etc)
- Support the board and staff via email to review documents, plans, and ideas
Members of the PAC are expected to comply with all policies of the FDF dba FD/MAS Alliance concerning nondiscrimination, harassment, and confidentiality.
While the meetings will all be confidential, the names of PAC members are public information and will be acknowledged on the FD/MAS Alliance website.