RARE Across America is the opportunity to meet with your Senators virtually and your Representative in-person in-district offices and educate them on the issues that are most important to the rare community by sharing your story.
Registration for Rare Across America 2026 is closed.
As rare disease patients, we can’t give up; we must remain hopeful that advancements in medicine will positively impact our lives. Speaking with my legislators over the past four years has been incredibly empowering as I advocate for change in the rare disease space. Rare Across America is a wonderful opportunity to meet with your legislator in your home state or virtually. I encourage you to share your story and advocate for legislation that can improve your life or the lives of other rare disease patients.
Kelly Considine
Patient Advocate
Connecticut
Resources
Virtual Trainings
- Tuesday, July 21 from 3:00 to 4:00 pm ET: General Training Webinar
- Tuesday, July 28 from 3:00-4:00 pm ET: Team Coordinator Training Webinar
- Advocates will be contacted separately with a link if selected to be a team coordinator
- Thursday, July 30 from 3:00 to 4:00 pm ET: Share Your Story with Policymakers Webinar
Official Legislative Asks One Pagers and Materials
- Scientific EXPERT Act One Pager
- Genomic Answers for Children’s Health Act One Pager
- Access to Genetic Counselor Services Act One Pager
- Credit for Caring Act One Pager
- Request to Join the Rare Disease Congressional Caucus
Spanish Translations of One Pagers
- Spanish Genomic Answers for Children’s Health Act One Pager
- Spanish Credit for Caring Act One Pager
- Spanish Access to Genetic Counselor Services Act One Pager
- Spanish Scientific EXPERT Act
- Spanish Request to Join the Rare Disease Congressional Caucus
Other Materials for Your Meetings
Plain Language Materials
Youth and Teens
- Genomic Answers for Children’s Health Act
- How to Make Connections with your Members
- Rare Disease Congressional Caucus – Fact Sheet
- Kids and Rare Diseases by the Numbers – Fact Sheet
Recordings
Additional Information on Asks
Other Organization’s One Pagers
- Supplemental Oxygen Access Reform (SOAR) Act– LAM Foundation
- Ensuring Lasting Smiles Act – National Foundation for Ectodermal Dysplasias
Thank you to our Rare Across America 2026 Sponsors
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With Additional Support From
