Delaware Youth Rare Disease Advocacy
NORD Rare Disease Centers of Excellence
Working Together to Reimagine the Future of Patient Care & Research
Every person living with a rare disease deserves access to high-quality care and meaningful support. Rare Disease Centers of Excellence work to improve how rare conditions are diagnosed, treated, and understood.
These centers bring together experienced specialists and coordinated care teams while supporting research focused on rare diseases.
Find a center, donate, or learn more at
Insurance Coverage in Delaware - Delaware | Genetics Policy Hub
Reach out to Legislators - National Organization for Rare Disorders (NORD) | Tell Policymakers to Support our Federal Newborn Screening System
Rare Disease Database - database of rare diseases
GARD Information Center - rare disease information & action groups
Orphanet Database - database of rare diseases and orphan drugs
RareCare Grants - patient assistance grants through NORD
Metabolic Disorders - flok | Innovation of Care
CareGiver Grants - up to $250 in aid for caregiver relief
Educational Grants- grants for rare disease education
Clinical Trials - NIH registry for clinical trials in Delaware
Research Match - clinical trial matching service
Delaware Resource Center - compiled resources for Delaware
Delaware Cancer Registry - statewide cancer information center
Undiagnosed Diseases Network - national survey of rare disease patients
Rare University - educational resources for rare disease patients
Angel Flight East - free, volunteer-based air travel for non-emergency medical care
Delaware Office of Rural Health - works to increase access to rural healthcare in Delaware
PIC of Delaware - provides resources for parents of children with disabilities
Delaware Chronic Disease Coalition - from the Delaware Academy of Public Health
Kennedy Krieger - research and crinical trials in the Baltimore Area
State Zebra Network - rare disease advocacy network