Advocacy Action Alert: Protect the NIH & FD/MAS Research
February 12, 2025 – For FD/MAS community members in the United States
Right now, both the National Institutes of Health (NIH) and the fibrous dysplasia/McCune-Albright syndrome (FD/MAS) community are facing significant challenges. We are closely monitoring proposed changes to government funding that could severely impact critical biomedical research. These changes have the potential to halt or delay important federally funded studies, including the landmark natural history study of FD/MAS. This study is the most comprehensive, long-term research project focused on this rare bone and endocrine disease, and it plays a crucial role in shaping our understanding of FD/MAS and identifying paths to better care and treatment.
In addition to the natural history study, many other FD/MAS-related research projects depend on NIH grants, including those administered by the National Institute of Dental and Craniofacial Research (NIDCR). Without stable funding, the progress we’ve made—and hope to continue—could be at serious risk.
We need your help to protect this vital research.
We urge you to contact your U.S. senators and congressional representatives. Please ask them to preserve and protect NIH research funding. Your voice has power, and when we speak up together, we can make a real difference. Policymakers need to hear directly from constituents who are impacted by rare diseases like FD/MAS. Your advocacy can help ensure that these essential studies continue and that the pursuit of better treatments remains on track.
To support your outreach, we’ve created nonpartisan talking points explaining why NIH research funding must be protected, especially for programs like those at NIDCR. We also offer resources to help you connect with your lawmakers:
Here are other resources that may be of help:
Even in the face of funding uncertainty, our commitment to the FD/MAS community remains strong. We continue to provide resources, push forward research, and support patients and families daily.
If you have questions or would like help getting involved, please contact us at info@fibrousdysplasia.org.
Thank you for being part of this community and for supporting our efforts to protect FD/MAS research.