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.

Happy advocating!

LEARN MORE AND REGISTER
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Author Hilary Rosselot

Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!

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Fragile X Advocacy
Learn more about NFXF’s Advocacy program, prior asks, and the impact on Fragile X.

  • two small chairs, tents, and fire ring

Camping and Fragile X

Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.