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Resources to help you start or grow your patient organization. View resources >
Visit our new platform where rare disease patients can fundraise, communicate and advocate. Start now >
NORD Patient Assistance Programs help patients obtain life-saving or life-sustaining medication. View programs >
The international advocacy day to bring widespread recognition of rare diseases as a global health challenge. Visit site >
NORD Response to New Draft of the Build Back Better Act
“NORD urges Congress to remove this harmful provision which would gut a key incentive from the 1983 Orphan Drug Act”
Five Disorders: Dee’s Rare Story
“Dee has five rare diseases and their advice to to learn everything, be proactive and plan ahead in your care”
NIH, FDA and 15 private organizations join forces to increase effective gene therapies for rare diseases
“NORD joins newly launched Bespoke Gene Therapy Consortium (BGTC), part of the NIH Accelerating Medicines Partnership (AMP) program”
Record-Setting NORD Breakthrough Summit Welcomes Nearly 1,000 Members of the Rare Disease Community
“Two days of insightful and engaging speakers, sessions, and networking at the most important event in rare disease saw record-breaking attendance ”
