Cure Rare: Not Rare At All.
Welcome to The Cure Rare Foundation
The Cure Rare Foundation is a 501(c)(3) nonprofit organization dedicated to accelerating the research and development of treatments and cures for rare genetic diseases—many of which affect children like our daughter, Stella.
Why Rare Isn't Rare
In the U.S., a disease is classified as rare when it affects fewer than 200,000 people. But collectively, rare diseases impact over 25 million Americans, with more than 7,000 known rare diseases worldwide. Despite the staggering number of individuals affected, fewer than 5% of these diseases have an approved treatment.
Why We Exist
We founded the Cure Rare Foundation to change this. Our mission is to:
Raise awareness about the reality of living with rare genetic diseases.
Fund critical research and innovation in genetics and gene therapy.
Support collaboration across scientists, institutions, and countries to accelerate discovery and treatment development.
Champion children and families navigating these diagnoses—starting with our own daughter, Stella, who inspires our every step.
Our Vision
We believe in a future where no child’s diagnosis feels like a dead end. A future where genetics research is open, global, and rapidly advancing. A future where rare doesn’t mean forgotten.
We invite you to learn more about Stella’s story, the broader rare disease community, and how you can make a difference by supporting or partnering with the Cure Rare Foundation.
Website in Development
We’re currently building a dedicated website for the Cure Rare Foundation that will serve as a hub for resources, research news, and ways to get involved. In the meantime, please visit us at www.StellaStrong.com—our temporary home and a space to follow Stella’s journey and learn more about our mission.
Join Us
We invite you to explore, connect, and take action. Whether you're a scientist, donor, advocate, or family navigating a rare diagnosis—you have a place in this movement.
Together, we can turn rare into research. And research into cures.
