News, Events & Blogs
Advancing Science, Empowering Patients: The Stiff Person Syndrome Research Foundation’s Commitment to the Rare Disease Community
What happens when your body suddenly refuses to move the way it should? Discover the story behind Stiff Person Spectrum Disorders—a rare, often misunderstood condition that can turn everyday movements into a struggle. This article follows Tara Zier’s journey from misdiagnosis to founding the Stiff Person Syndrome Research Foundation, now at the forefront of global research and advocacy. Dive in to meet patients, learn how a superstar like Celine Dion is shining a spotlight on SPSD, and see how a growing community is reshaping hope, diagnosis, and support. Read more to uncover the science, stories, and resources making a difference for those affected by SPSD.
NIH's All of Us Program Reaches a Historic Milestone for Precision Medicine
The NIH's All of Us Research Program has reached a historic milestone, becoming the world's largest integrated genomics and health database. Learn how this achievement could accelerate rare disease research, improve precision medicine, and bring new hope to patients and families worldwide.
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.