Seeking Patient Leaders and Advocates

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. 

Patient Advisory Application

Are you diagnosed with FD or MAS? (Select all that apply)(Required)
Do you have experience in any of the following areas?
What is your gender?(Required)
What are your pronouns?(Required)

How do you identify your ethnicity? (Select all that apply)(Required)