Delaware Youth Rare Disease Advocacy
Estimates suggest that 75% of rare disease cases manifest in children nationwide, and it is appropriate that youth take interest in issues that disproportionately affect their peers. The Delaware Youth Rare Disease Initiative hopes that its members’ time, energy, and dedication will result in a stronger, more informed, and more equitable healthcare system for individuals and families living with rare diseases statewide.
- Rare Diseases in Delaware: An Overview
Chronic Disease Month Update
DYRDI is happy to announce that Chronic Disease Month has been officially recognized in the state of Delaware! Governor Matt Meyer recently signed the Chronic Disease Month Proclamation (written by Alek!) into law July 24th, 2026.
Take Action!
The Delaware legislature is out of session until January 2027, but it's never too late to contact your elected representatives. Join more than 50+ other advocates in emailing your local and federal representatives about important legislation (including those drafted by DYRDI!). View their voting records on key topics here.
Click here to learn more and view our open letter!
What We Do
Delaware Youth Rare Diseases Initiative
DYRDA is dedicated to advancing rare disease advocacy in Delaware, providing resources and support to affected populations. Delaware's unique healthcare landscape necessitates specialized attention to rare diseases through effective, community-based action. Founded by a passionate team of students, our mission is to drive change and improve outcomes for those battling rare diseases in Delaware.
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Collaborations
The Delaware Youth Rare Disease Initiative collaborates with the state's Rare Disease Advisory Council to maximize its impact.
Contact us at delaware.yrdi@gmail.com if you'd like to work with us at any time!
Statistics
Global
Approximately 400 million people live with a rare disease, contributing to adverse health outcomes throughout the world.
Nationwide
In the United States, 1 in 10 Americans lives with a rare disease, affecting up to 30 million patients and countless families nationwide.
Delaware
There is no publicly accessible data on rare diseases in Delaware. Check out our report for policy insights and recommendations.
Legislative Asks
Chronic Disease Day Resolution: Bill (drafted-to be filed @ the next legislative session!)
Rare Disease Registry Act: One Pager, Bill (to be filed @ the next legislative session)
Medical Transportation Reform: One Pager, Bill
Newborn Testing Reform: One Pager, Bill
contact delaware.yrdi@gmail.com if you are interested in expressing your support for these bills to legislators
Volunteering @DYRDI
Join us at the following events!
- 6/13/26: Millon Dollar Bike Ride @UPenn
- 7/14/26: Chronic Disease Day Advocacy @Capitol Hill
- 10/25/26: NORD Breakthrough Summit @Capitol Hill
- February, 2027: Inaugural Delaware Rare Disease Conference (TBA)