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About NORD


The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is the leading voice of the rare disease community.  We are a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. For more than 30 years, we have been committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Our team is made up of dedicated and compassionate patients, parents and advocates.  We are in the fight against rare diseases alongside you fighting for all 30 million Americans – including the ones we love and have lost.

Check out our 30-year timeline to understand more about NORD's work and impact.

What is A Rare Disorder?

Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases.

NORD's Vision

NORD supports innovative research, fair and consistent government policies, and access to medically necessary treatments. Read more about NORD’s vision and mission.

Our Sources of Funding

NORD is a non-profit organization. Its primary sources of funding include grants and contracts, contributions, and an annual fund-raising event. Ninety-five cents of every donated dollar go directly to patient/family services. Learn more.

NORD Programs and Services

NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs. Read more about NORD’s programs and services.

NORD Partnerships

NORD works closely with many groups in the rare disease community including our European counterpart, government agencies such as the NIH and FDA, and a coalition of partners for Rare Disease Day.

Support NORD

Through donations, membership, support for advocacy initiatives, and helping spread awareness, you can show your support for NORD and the rare disease patient community it represents. Please join us in these important endeavors.


NORD’s Senior Staff

Medical Advisory Committee

Board of Directors

Member Organizations

Corporate Council Members

Contact NORD

800-999-NORD or - we look forward to hearing from you!

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The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .