Join Other Rare Disease Advocates in Your District — August 8–19, 2022
It’s that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You still have time to register↗.
Many of you have participated the past few years in in-district meetings with your members of Congress and their staff. These were all scheduled with our partner the Rare Disease Legislative Advocates (RDLA).
This year, we are planning both in-person and virtual meetings. All U.S. House of Representatives meetings will be in-person only. All Senate meetings will be virtual only. Advocates can choose to do both the in-person meeting with their representative and the virtual meetings with their senators.
RDLA organizes all the meetings and helps you prepare by providing legislative resource materials and hosting pre-meeting training webinars. It is all very streamlined and easy on you!
It is always powerful to advocate for Fragile X, both during our own Advocacy Day and in-district with other rare disease communities.
Registration closes July 8, 2022.
We will be providing Fragile X-specific asks via handout as the meetings get closer.
Fragile X Advocacy
Learn more about NFXF’s Advocacy program, prior asks, and the impact on Fragile X.
2023 Advocacy Day Asks
NFXF Advocates head to Capitol Hill to ask for ongoing federal funding for Fragile X research and legislation to support telemedicine
My Fragile X Advocacy Journey
NFXF Director of Community Empowerment, Missy Zolecki, shares her recent experience as a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program