More than 500 Advocates Participated in RARE Across America 2026

Over 500 advocates from 47 states, Puerto Rico, and D.C. participated in 265 meetings with their Members of Congress!

These advocates from around the country met with Senators and Representatives in their home states to advocate for bi-partisan rare disease legislation including:

• Credit for Caring Act (S. 925/H.R.2036): This legislation would help working family caregivers offset the cost of some caregiving expenses. Eligible caregivers could receive the credit if the care recipient meets certain functional or cognitive limitations or other requirements certified by a licensed healthcare practitioner. The credit amount would be 30% of the qualified expenses paid or incurred by the caregiver above $2,000, up to a maximum credit of $5,000.
• Access to Genetic Counseling Services Act (S. 3607/H.R.6280): This legislation would recognize genetic counselors in the Medicare program, allowing direct reimbursement for their services and improving access to care for the rare disease community.
• Genomic Answers for Children’s Health Act (H.R.7118): This legislation would make clear that whole genome sequencing and whole exome sequencing (genomic sequencing) is a covered Medicaid service. It would also require the Centers for Medicare & Medicaid Services (CMS) to convene national stakeholders and make them aware of new policies adopted in the bill. Additionally, it directs the U.S. Government Accountability Office (GAO) to publish a report on health outcomes, implementation challenges, and recommendations within 24 months of passage.
• Scientific EXPERT Act (S.822/H.R.1532): This legislation seeks to formalize the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting initiative at the Food and Drug Administration (FDA). It would enable scientists and FDA reviewers to share their expertise and knowledge in a product-agnostic setting without compromising the integrity of the review process and establishes a formalized meeting structure for enhanced collaboration between medical experts, drug sponsors, scientific organizations, and patient advocates.

By sharing their stories and advocating for important bills like those listed above, rare disease advocates came together during Rare Across America to create an impact that will benefit the community for years to come!