News, Events & Blogs
Congress Reauthorizes Rare Pediatric Disease PRV Program: A Major Win for 30 million Americans
U.S. Congress delivered a major victory for the rare disease community with the five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program alongside increased federal research funding and several patient-centered healthcare reforms.
Art That Advocates: Inside EveryLife Foundation’s Rare Artist Program
Opening in June 2026, the annual Rare Artist contest invites participants aged five and older to share their lived experience across traditional art, digital art, music, poetry, and film. Each year, approximately 230 submissions are received from patients, caregivers, siblings, and others connected to someone with a rare disease.
When Lyme Stole Her Wings, Her Will Took Flight: The Kaylyn Goode Story
The Kaylyn Goode Story — seventeen years undiagnosed, and the resilience that turned a rare disease journey into a mission for awareness.