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Tools and Resources

Search NORD’s Database for reports on more than 1,200 diseases. Search database >

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 >

NORD raises awareness of rare diseases among physicians, clinicians and other medical professionals. View guides >

The international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Visit site >


  • Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

    “Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December”

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  • NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

    “More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH”

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  • The Hill publishes NORD op-ed: Congress must act now to help 15 million sick children

    “We need your help - please join us in advocating for the reauthorization of the PRV program”

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  • A Group No One Applies to Join

    “Guest Blog: An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016”

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