Advocates will have the opportunity to virtually meet with their Members of Congress and share their rare disease story. Prior to meetings with Members of Congress, advocates will attend virtual trainings on how Congress creates laws, how to communicate with your Representatives and Senators, and how to understand key policies affecting the rare disease community, designed for youth and teens.
Anyone between the ages of 10 and 18 with a connection to the rare disease community is welcome to participate, as well as their parents or guardians.
When?
Virtual meetings with Members of Congress will take place on Thursday, June 18, 2026 between 9 am and 5 pm ET. Dates for the required training workshops will be held on the following dates:
- Sunday, May 31, 3-4 pm ET: Virtual Meet and Greet
- Wednesday, June 3, 5-6 pm ET: General Training Webinar
- Wednesday, June 10, 5-6 pm ET: Share Your Story with Policymakers Webinar
Recordings will be made available to advocates who cannot attend webinars in live time.
Additional Resources
- Training Videos and Recordings
- Video Explaining the Give Kids A Chance Act and PRV Program
- Fact Sheet on Kids and Rare Diseases by the Number
- How to Make Connections with your Members of Congress
- Share Your Story Worksheet
- Share Your Story Tip Sheet
- Legislative Scorecards
- List of Rare Disease Congressional Caucus Members
- Social Story on Meeting with a Legislator
- How to Make Connections with Your Members of Congress
If you have any questions, please contact RARE Advocates at advocacy@rareadvocates.org.
Thank You to Our 2026 Sponsors
Presented by:
With additional support from:
