Fdmas Alliance

Research grants program: in partnership with The upenn orphan disease center and The million dollar bike ride (mdbr) program, The fd/maFdmasas Alliance funded three research projects in 2022: title: pain and analgesic mechanisms in a mouse model of Fibrous Dysplasia. Institution: university of copenhagen title: investigating key clinical aspects of Fibrous Dysplasia of bone in a transgenic mouse model (ef1a-gsr201c mice) of The disease: pain, effect of anti-resorptive treatments and rebound phenomenon. Institution: sapienza university of rome in spring 2023, team fd/maFdmasas and partners raised 161,284 for 2 - 4 research projects that will be announced in 2023 and awarded in 2024.

Community education: 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 during The fiscal year. Note: fd/maFdmasas Alliance hosted a three-day fd/maFdmasas community conference in september 2023 after The close of The fiscal year.

Other research initiatives: we support, maintain, and advance research initiatives, including The fd/maFdmasas patient registry, an irb-approved study, and recruitment resource for researchers. Fd/maFdmasas Alliance is instrumental in developing and formalizing an international coalition of fd/maFdmasas patient groups and researchers.

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, lists of vetted clinicians with experience treating The disease, 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.