it’s rare disease day!

Happy Rare Disease Day, Myositis Family!

February 29th (the rarest day of them all) is officially Rare Disease Day, and this year February 28th is our time to let the world know “We Are Here”! Join NORD’s mission for advocacy, education, and support. Learn how you can get involved!

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The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Click here for their website.

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.

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