US based Advocates Needed, July 9th, 2026
Cornerstone to FD/MAS Alliance’s vision for a world where everyone with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) can thrive is our work advance research and advocate on behalf of the FD/MAS community. That’s why I am calling for advocates to address a pending executive order (OMB-2026-0034) that would have a significant impact on research, and public comments will close July 13th.
OMB-2026-0034 proposes changes that would impact research and research funding by government agencies, including NIH. Several groups we’re involved with, such as the Endocrine Society and the American Association for Dental, Oral, and Craniofacial Research, have reached out to us with concern about this proposed regulation.
Here are some examples of how the proposed changes could impact research:
- Section 200.205: Political appointees must approve every grant
- Section 200.340: Grants can be terminated at any time, with no appeal.
- Section 200.202: Research must align with White House priorities, not scientific need or congressional mandate.
- Section 200.220: International collaboration is prohibited
International collaboration, peer-reviewed research, and uninterrupted, non-partisan scientific inquiry have been cornerstones of FD/MAS Alliance’s vision for improving healthcare outcomes for our community over the last 20 years.
Your public comment on these proposed changes, regardless of how you feel about them, is a way to share your perspective and show up as an FD/MAS advocate.
Here are some tips for commenting:
- Comments should be unique and specific to your experience.
- If you can, reference the relevant section of the rule and address it directly (see above sections for support).
- Make a concrete recommendation, such as the withdrawal of the proposed changes — don’t just criticize.
Comments are due by July 13, 2026. Please consider putting in your comments today!
Thank you,
Tovah
Tovah Burstein, (she/her)
Executive Director
E: tburstein@fibrousdysplasia.
7315 Wisconsin Ave Suite 400 W PMB 103 Bethesda, MD 20814
www.fdmasalliance.org