Delaware Youth Rare Disease Advocacy
State Advocacy
The Delaware Youth Rare Disease Initiative advocates for state-level reform supported by nationally accredited organizations and local input. Its members engage in legislative and other governmental outreach to enact changes that benefit rare disease patients, providers, and researchers statewide.
Read our report at research and data to learn about relevant regulatory issues in Delaware.
Prescription Drug Costs
California recently introduced legislation (AB 1877) that could potentially ban step therapy for rare disease prescriptions as well as several other advancements for the insurance landscape. The DYRDI supports this legislation and has several meetings planned with legislators to explore similar mechanisms for implementation in Delaware.
Recent News
Million Dollar Ride
DYRDI leaders Alek Lee & Manav Suresh volunteered this Saturday at the Orphan Disease Center's Million Dollar Ride. They had the pleasure of celebrating hundreds of cyclists and individuals with rare diseases who came out to the event, which has raised more than $22 million since its inception. Donate to them here to support a great cause.
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.
Legislative Asks
Volunteering @DYRDI
Chronic Disease Day Resolution: Bill (drafted-to be filed!)
Rare Disease Registry Act: One Pager, Bill (to be filed at the next legislative session)
Medical Transportation Reform: One Pager, Bill
Newborn Testing Reform: One Pager, Bill
email akaleklee@gmail.com to learn more about the bills and how they were drafted
​
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)​