Watch the Launch Meeting for International Consortium for FD/MAS
Foundation News Research NewsOn July 14th 2022, the International Consortium for FD/MAS (ICFDMAS) held a launch meeting open to all researchers, clinicians, and advocates. The meeting agenda included an introduction to the ICFDMAS, a presentation from the collaborating patient groups from around the globe, and updates on clinical and basic research in the field of FD/MAS. The meeting […]
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International Consortium for FD/MAS Launch Meeting
Research NewsResearchers, clinicians, and advocates are invited to the International Consortium for FD/MAS Launch Meeting July 14th, 2022 at 13:00 – 16:00 GMT (9:00 – 12:00 EST) Please Register via this link.
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Global collaboration launches the International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome
Advocacy News Foundation News Research News18 February 2022 Media Contact: info@icfdmas.com FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, and European Association for McCune-Albright Syndrome are announcing the launch of the International Consortium for Fibrous Dysplasia and McCune-Albright syndrome Ltd. (ICFDMAS). Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that […]
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Meet the International Consortium for FD/MAS
Foundation NewsFebruary 20th at 11:00 EST on Facebook live (even if you don’t have Facebook) The international Consortium for FD/MAS (ICFDMAS) will officially launch on 20th of February, 2022. The group has met informally since 2015 as a group of researchers, clinicians, and patient advocates from around the world. Over the course of these meetings, a consensus was […]
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2020 for our 20th Chromosome
Advocacy News Foundation NewsThe First-Ever FDMAS Global Awareness Week! FDF participated in the first-ever FD/MAS Global Awareness Week, February 20-28th, 2020. February 20th was chosen as the launch of this week of awareness and advocacy because both FD and MAS as well as related diseases such as Mazabraud syndrome all originate from a mutation on the 20th chromosome. […]
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Fostering Partnerships and Future Research in Florence
Foundation News Research NewsAn important part of developing new and innovative FD/MAS research is networking with researchers that have similar interests. This is one of the reasons FDF and FD/MAS researchers attended the 4th Meeting of the International FD/MAS Consortium. This meeting takes place annually with the goal of building connections among FD/MAS researchers. This year’s meeting took […]
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A New Clinical Pathway for FD/MAS
Foundation News Treatment NewsThis spring, a new Clinical Pathway for FD/MAS Care was published by the International Consortium of FD/MAS Researchers. This news is equally exciting for the patient community as it is for this renowned group of researchers and patient advocates who have worked on the Clinical Pathway project for several years. Along with other international patient […]
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3rd International FD/MAS Meeting in the Netherlands
Advocacy News Foundation News Patient Spotlight Treatment NewsPatient and researcher meetings are important because they allow engaged members of a rare disease community to organize, strategize, and take action. This year, patient and family meetings were held in Maryland in the United States, Leiden in the Netherlands, and Birmingham in the UK. FDF hosted the United States meeting and attended both European meetings […]
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Patient & Family Conference Continues the International Fight against FD/MAS.
Foundation NewsFD/MAS is a disease without borders or boundaries. All FD/MAS patient groups share goals, including connecting families with the best available treatment information, and advancing the search for a cure or treatment for this rare disease. Patient meetings are important to reaching these goals. Patient meetings help advance the fight against FD/MAS by empowering patients […]
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