Mobilizing Youth for Rare Diseases and Access to Therapies.
The Problem and What we aim to do
Rare diseases steal time, hope, and answers from over 300 million people worldwide. Too often, families wait years for a diagnosis, face dead ends in treatment, and struggle alone while the world looks away.
We’re done waiting.
Youth for Rare Diseases is powered by students who refuse to let rare mean forgotten. We work with families, clinicians, researchers, and policymakers to raise awareness, fight for fair policies, and push for newborn screening that saves lives. If you believe every story deserves to be heard and every child deserves a fighting chance, we need you.
Add your voice. Take action.
Help us make rare visible, starting today.
Get Involved
Why Advocate?
Delayed Diagnosis costs lives: Many rare disorders have treatments that only works before symptoms appear. When conditions are not detected early enough, they can cause irreversible damage. This is where Newborn Screening can save and improve lives.
Policy decides access: Newborn Screening, treatment, funding access dont happen by accident.
Youth voices MOVE systems: Students CAN influence legislation, research, and public awareness together.
No voice is too small. No disease is too rare.
The Impact We've Made
500+ handwritten signatures
Within two weeks, we gained 500+ handwritten signatures in support of addition of Metachromatic Leukodystrophy (MLD) into Newborn Screening in North Carolina.
Received Governmental encouragement
Received personal messages of appreciation from numerous government officials. Invited to present our campaign to our counties Board of Health on January 21st.
35 active volunteers
Youth For Rare Diseases began with 35 driven and passionate volunteers who stepped up to advocate for families affected by rare diseases.
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