Researchers and Advocates Move Forward with Department of Defense Funding
Advocacy News Foundation News Research News UncategorizedOne 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 News UncategorizedEvery 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 […]
Click to Read
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. […]
Click to Read
Imagine a World without FD|MAS
Advocacy News Foundation News UncategorizedFebruary 20th 2020 marks the beginning of the very first FD|MAS Global Awareness Week. We’re celebrating by asking patients, caregivers, and advocates to share their vision for a world without FD|MAS. What would your life look like if this horrible disease were cured? Would you… Have perfect attendance at school? Be a college football star? […]
Click to Read
Fibrous Dysplasia Included in the Department of Defense Appropriations Bill
Advocacy News Foundation News Research News UncategorizedWashington 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 […]
Click to Read
Fall Webinar Success Leads to Hopes for Future Programming
Advocacy News Foundation News Treatment NewsThis past fall, FDF livestreamed two Educational Webinars over Facebook for free. As an organization, FDF thought it was important to bring educational programming to the fibrous dysplasia and McCune-Albright community and we were thrilled to bring the experts to our community. Two webinars took place and were well attended by the patient community. A […]
Click to Read
Join Us for the Inaugural FD|MAS Global Awareness Week: February 20-27
Advocacy News Foundation NewsFibrous Dysplasia Foundation, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, Eamas, and MASFD of France are announcing the first annual FD/MAS Global Awareness Week, between the 20th and 27th of February, 2020. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and […]
Click to Read A Seat at the Federal Research Table
Advocacy News Foundation NewsWashington DC (October 18, 2019) Fibrous Dysplasia included the Department of Defense Peer-Reviewed Medical Research Program Thanks to our champion who sits on the Appropriations Committee, Senator Patty Murray (D- WA), Fibrous Dysplasia made it into the Senate DOD Appropriations Committee recommendations to the Secretary of the Department of Defense in conjunction with the US […]
Click to Read
A Patient’s Roadmap to Curing A Rare Disease
Advocacy News Foundation News Research NewsReport from the Global Genes Summit: With community, innovative treatments and cures happen! Having recently embraced my role as the new executive director of the Fibrous Dysplasia Foundation (FDF), I embarked on a steep learning curve. Fibrous dysplasia, McCune-Albright syndrome (FD/MAS) is a very complicated disease and the path to treatment can feel daunting. Luckily, […]
Click to Read
FDF launches a critical campaign for more research funds
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 could help the rare disease community, including the OPEN ACT and NIH research funding. These programs are important to […]
Click to Read