Program areas at Fdmas Alliance
Research programs: - in partnership with The upenn orphan disease center and The million dollar bike ride (mdbr) program, fd/maFdmasas Alliance funded three research projects in fiscal 2023-24 - "probing central and peripheral mechanisms of pain and dysfunction in Fibrous dysplasia/mccune-albright" (boston children's hospital) - "spatial transcriptomics to elucidate teh mechanism of anti-rankl inhibition of Fibrous Dysplasia bone lesions" (brigham & women's hospital) - "testing The specificity and efficacy of compounds that inhibit camp signaling for The development of potential therapeutics for fd/masFdmasas" (university of California davis and boston college) in spring 2024, fd/maFdmasas Alliance raised 120,702 in mdbr grants for fd/maFdmasas research to be announced in 2024 and awarded in 2025. - support and maintenance of The fd/maFdmasas patient registry, an irb-approved study.
Education program we empower The fd/maFdmasas community with The best educational resources and share these resources on The fd/maFdmasas Alliance's website and youtube channel. We produce and share educational webinars for patients and caregivers.
Fd/maFdmasas conference The 2023 fd/maFdmasas Alliance community conference combined patient-centered science with real-world strategies for those affected by fd/masFdmasas. It also hosted The inaugural meeting of The international consortium for fd/maFdmasas (icfdmas), which updated management guidelines and represented a global collaboration spearheaded by The fd/maFdmasas Alliance.
Fd/maFdmasas Alliance, in addition to its other program services: - maintains a comprehensive, up-to-date repository of information for patients, caregivers, and medical practitioners, including recent research publications, diagnosis and treatment guidelines, relevant funding opportunities for basic and clinical investigators, and information on ongoing clinical trials in fd/masFdmasas. - expands and strengthens The network of fd/maFdmasas researchers and patient advocates worldwide through education, communications, and Alliance- building initiatives, including a biennial conference. - remotely attends or, when suitable, travels to both domestic and international scientific gatherings to advocate for fd/maFdmasas research opportunities to broaden The network of involved researchers and other stakeholders working on potential therapies. - provides mentoring and community building among other fd/maFdmasas patient organizations to enhance The effectiveness and coordination of these groups worldwide.