Advocating for FD/MAS patients through Patient Organization Coalitions and the NIH

It’s hard to overstate the importance of the National Institutes of Health (NIH) for people with fibrous dysplasia/McCune-Albright syndrome (FD/MAS), cherubism and related bone diseases.

The NIH is home to globally recognized FD/MAS researchers. These NIH-based researchers study how FD/MAS works, come up with ideas of how to stop it, and deliver top-quality care for FD/MAS patients. The NIH also funds researchers at other hospitals and universities across the globe. In fact, about 80% of the NIH annual budget becomes grants for research projects conducted outside the NIH. These grants have funded important FD/MAS projects, including the first International Scientific Conference on Fibrous Dysplasia of Bone, McCune Albright Syndrome, and Cherubism.

Without the NIH, the fight against FD/MAS would be much further behind. In recognition of the important role the NIH plays in beating FD/MAS, the Fibrous Dysplasia Foundation works with federal lawmakers, other patient groups and NIH leadership to make sure that the NIH can continue to be a strong partner to the FD/MAS community for decades to come.

Recently, the Fibrous Dysplasia Foundation (FDF) joined two coalitions of patient organizations to advance our NIH-related advocacy goals: the Friends of the National Institute of Dental Craniofacial Research (NIDCR) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition. The NIDCR is the institute at the NIH that is home to the Craniofacial and Skeletal Diseases Branch and the long-running natural history study of FD/MAS that is currently overseen by Dr. Alison Boyce. As an institute, NIAMS plays an important role in providing research grants related to FD/MAS.

Participating in these coalitions will increase the FD/MAS community’s ability to communicate with lawmakers and NIH leadership. Since joining the Friends of NIDCR and NIAMS Coalition the FDF has delivered a joint recommendation to Congress advocating for a well-funded NIH. The FDF has also delivered comments to the NIDCR about how the NIDCR could improve a proposed 2018 NIH funding priority by more directly addressing the scientific mysteries of bone pain.

“The Fibrous Dysplasia Foundation looks forward to working together with other patient organizations to help federal lawmakers understand the value of a strong NIH. The NIH is a key partner in creating a better tomorrow for people living with FD/MAS. It’s essential that the NIH is adequately and consistently funded,” said FDF Executive Director Deanna Portero.

“We know that NIH leaders recognize the importance of soliciting input from patient advocates. We are grateful for the opportunity to inform the NIH on the needs, priorities and perspectives of the FD/MAS community through our participation in the Friends of the NIDCR, and the NIAMS Coalition.”