International FD/MAS Patient Groups Release Top Priorities for FD/MAS research
Advocacy NewsFOR IMMEDIATE RELEASE Washington, DC (July 14th, 2022) To the researchers and clinicians of the International Consortium for FD/MAS: Patient groups from around the globe including FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, EAMAS, FD/MAS Brasil, and GULI (FD/MAS) Care Center have collectively identified nine […]
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From Hobby to Hope: How a Mother’s Love is Fighting FD/MAS in France
Foundation News Patient SpotlightWhether you love the cooler temperatures of fall, or hate it, Aurélie Lagneau of France has given the FD/MAS community a new reason to be enthusiastic about sweater weather. This avid knitter has taken her skill with yarn and her love for her daughter to create a unique fundraiser, Supportive Skein, which has already raised $28,000 […]
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Take it as your Torch: An Advocate Embraces his Unique Experience
Foundation News Patient SpotlightEverybody has their dark days, and for fibrous dysplasia, McCune-Albright Syndrome (FD/MAS) patients, those days can be shrouded in excruciating pain and the isolation of dealing with a rare disease. Canadian Author Jonathan Birdsall has taken those dark feelings and turned them into art. Jon recently published a novel, The Cripples Game and has a […]
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Fibrous Dysplasia Foundation’s Rare Disease Day Wrap Up
Advocacy News Foundation NewsFebruary 28th, 2017 we celebrated International Rare Disease Day, an annual awareness day dedicated to elevating public understanding of rare diseases. This year’s theme was “research,” and the Fibrous Dysplasia Foundation (FDF) participated by raising money for FD/MAS research and gathering patient stories in the scientifically designed Patient Registry. The FDF also participated in Rare Disease […]
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Patient Organizations & Doctors Gather to Guide Progress for Better Treatment on a Global Scale
Advocacy News Foundation NewsMomentum is building among researchers across the world who study fibrous dysplasia and McCune-Albright syndrome (FD/MAS). From December 1st through December 3rd, a powerful group of clinical researchers met in Lyon, France for the Second International FD/MAS Initiative Meeting. Attendees from the research world included US researchers Michael Collins and Alison Boyce of the National […]
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