Disability Benefits 101 and 102
Advocacy News Foundation NewsWe’re pleased to share the recording of this 2 part workshop designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available. These benefits are discussed in detail in clear, concise language, including how to qualify for, and the differences between, Supplemental Security Income (SSI), Medicaid, Social Security […]
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Meet the PAC!
Advocacy News Foundation News Patient SpotlightIn July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful. The community members who stepped forward to form this first class of ambassadors represent some of […]
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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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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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A Message from Lauren Foster, Patient Advocate
Advocacy News Constant Contact Foundation NewsI stand by Team FD/MAS and here’s why: WE matter. Our health matters. Some people don’t realize that if we donate the price of a meal at McDonald’s, we help find a cure. As an FD/MAS patient, I’ve struggled with this disease every single day of my life, as I know so many of you […]
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FD/MAS Federal Research Funding Initiative
Advocacy News Research NewsThe FD/MAS community of researchers and advocates continues forward with the Department of Defense Funding Opportunity One of the most significant initiatives that FD/MAS Alliance continues to advance is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a major research opportunity that our team of advocates has unlocked for FD/MAS researchers through the […]
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Researchers and Advocates Move Forward with Department of Defense Funding
Advocacy News Foundation News Research NewsOne of the biggest initiatives that FDF is working on right now is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a huge research opportunity that our team of advocates have unlocked for FD/MAS researchers through the US Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Thanks to the tireless efforts […]
Click to Read An FD Warrior’s experience at Rare Disease Week!
Advocacy News Foundation NewsEvery year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that helps the rare disease community including advocating for NIH research funding. This year, FD Warrior Brittany Anderson was among […]
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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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Fibrous Dysplasia Included in the Department of Defense Appropriations Bill
Advocacy News Foundation News Research NewsWashington DC (December 20, 2019) Fibrous Dysplasia Included in the Department of Defense Peer-Reviewed Medical Research Program We are grateful for the support of the Chairs and Ranking Members of the Appropriations Committee and the Defense Appropriations Subcommittee, the individual members on the Subcommittee and the Senators, as well as their staff. Thanks to their […]
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