Causes: Health, Medical Research, Voluntary Health Associations & Medical Disciplines

Mission: The FD/MAS Alliance (formerly Fibrous Dysplasia Foundation) is a community-driven 501c3 nonprofit that fosters the development of evidence-based treatments for fibrous dysplasia and McCune-Albright syndrome (FD/MAS). We advance research, provide education and channel the voices of individuals and caregivers with FD/MAS.

Results: For the fiscal year 2022, results include- Launched of monthly Community Conversations, a monthly webinar series - Awarded 3 research grants - Read more: https://fdmasalliance. org/about/fdf-supported-research/- Raised $160K for FY 2022 in partnership with UPenn Orphan Disease Center's Million Dollar Bike Ride: Read more https://fdmasalliance. org/team-fd-mas-2022/-Formalized the FD/MAS Alliance Patient Advisory Council: Read more https://fdmasalliance. org/patient-advisory-application/- Expanded the FD/MAS Patient Registry - 1030 patients enrolled - Supported 3 research articles published by Amanda Konradi, Ph. D. analyzing the quality of life measures in the Registry, among other accomplishments.

Target demographics: individuals diagnosed with FD/MAS, their families, friends and caregivers, as well as clinicians, medical staff and researchers who serve this population

Direct beneficiaries per year: over 3000+ patients by sharing resources, providing education and building community.

Geographic areas served: the USA. Virtual location with real community.

Programs: education, research and advocacy.