Fd Mas Alliance

The FD/MAS Alliance and Dr. Upadhyay: A Multi-Million Dollar Success Story in Patient-Powered Research A strong patient advocacy organization can have a transformative impact on rare disease therapeutic development. FD/MAS Alliance aims to provide keystone supports that help researchers to advance the science of fibrous dysplasia, McCune-Albright syndrome, a rare and often debilitating bone and […] We are pleased to share FD/MAS Alliance’s Annual Report Because of your support, we had an incredible year of progress for the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community! This year, the FD/MAS Patient Registry served as a recruitment resource for researchers studying FD/MAS and pain. We also awarded over $120,000 in new research grants and […]

Join us December 10th, 2025 at 7:30 pm EDT (4:30 pm PDT) for a Holiday Themed FD/MAS Community Meet-up hosted by members of the Patient Advisory Council. Join the Patient Advisory Council for some holiday cheer from around the world. Share your favorite holiday tradition and hear from others! Sarah and Beatriz have some fun […] 4701 Sangamore Rd Ste 100N, Box #1199Bethesda, MD, USA The FD/MAS Alliance, incorporated as The Fibrous Dysplasia Foundation, is dedicated to leading the fight against fibrous dysplasia and McCune-Albright syndrome (FD/MAS), rare and complex bone and endocrine diseases.

Through programs focused on research, education, and support, we aim to improve the lives of those affected by FD/MAS. We are committed to advancing scientific knowledge, raising awareness, and providing vital resources for patients and families while advocating for better treatments and outcomes for this underserved community. Together, we strive to make a difference in the lives of those living with FD/MAS. The FD/MAS Alliance (incorporated as the 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. To ensure that individuals with FD/MAS receive the best possible treatments for their many challenges.

To accelerate the discovery of cutting-edge treatments—and ultimately, a cure for FD/MAS—over the next 5-15 years. Together, we can realize this vision and create a future where everyone affected by FD/MAS can thrive. Foster the development of improved, evidence-based treatments for FD/MAS by advancing research Remember the 2023 #FDMASCommunityConference? We're excited to discuss the first paper that came from discussion at the conference with first author Biagio Palmisano. Join us next Thursday to discuss “Fibrous dysplasia/McCune-Albright syndrome: state-of-the-art advances, pathogenesis, and basic/translational research.” https://lnkd.in/eYJ_S98r

Congrats to our friend and collaborator, Natasha Appelman-Dijkstra! So many of our community wins (the clinical guidelines, continued in-person and virtual meeting opportunities) are made possible because of her dedication to this community, and we cheer her on at this milestone! https://lnkd.in/eAESudz7 "The growing commitment of the scientific community, reflected in the numerous research groups around the world actively working on FD and the tight collaboration with patients’ organizations, is expected to provide significant advancement of... Congratulations to Biagio Palmisano, Camryn Berry, Alison Boyce, Julia Charles, Michael Collins, @Alessandro Corsi, Fernando Fierro, Anne-Marie Heegaard, Hanne van der Heijden, Charles Hoffman, Chelsea Hopkins, @Jaymin Upadhyay, @Paul Wehn, @Kelly Wentworth, Yingzi Yang,... https://lnkd.in/dqT8WgaG

The cancellation of these funds is a setback for the FD/MAS community who has supported Dr. Yang's research through Million Dollar Bike Ride funding and advocacy efforts. Her progress held so much promise for our community, as well as for our broader understanding of metabolic bone health. We are working hard with our network to support Dr. Yang's continued progress and support federal research funding at all levels. https://lnkd.in/e5betJG2.

There are serious threats to healthcare and medical research in the US right now. We are reaching out with an urgent call to action. Call your elected representative and ask them to oppose any budget bill that cuts funding for healthcare and essential public health research. Medical research and programs improve lives and save money for individuals and the American people. https://lnkd.in/gaZUnArN National Organization for Rare Disorders, Inc.

(NORD®) IAMRARE® Registry Platform Privacy Policy This Privacy Policy (the “Policy”) describes the type of information that the National Organization for Rare Disorders (the “Company”) gathers from users (“Users” or “you”) of the IAMRARE Registry Platform (the “Platform”) and how... The Policy governs the Platform specifically and is separate from any privacy policy that may govern other services or websites offered by the Company. II. What Information Does the Company Collect?

The Company occasionally collects Personal Information from Users. “Personal Information” means information that can be used to identify an individual. After a screening of the film Holding Moses at Global Genes’ Week in RARE 2024, we welcomed […] On October 16th, Dr. Al Freedman, Psychologist, Consultant, Keynote Speaker and SMA Father, joined us to host […] Jeff Levenson submitted his film, “Life Through A Lens,” about a Hollywood photographer who has Adult polyglucosan […]

Lori Renna Linton made the film, “Pass Me The Potatoes, Please” about Hereditary Spastic Paraplegia (HSP) and […] Our Financial Assistance Webinar series videos are available to view below! Part 1 answers the question: what […]

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