Rare Disease Community and Support

With more than 7,000 diseases and 25 million Americans impacted by them, NORD has always recognized the need to help families, research and medical communities connect, organize and collaborate to achieve the greatest impact possible. There are so many exciting advancements on the horizon, our goal going forward is to ensure that the impact of that progress is felt by all; and that no one gets left behind.
—Pamela Gavin, Executive Vice President, NORD

Ways We Provide Community Support

Driving Policy

We represent the needs of the rare community and advocate on their behalf in local, national and global policy. We work with our Advocacy Committee and Policy and Advocacy Taskforce to identify issues and unite the voices of advocates within the rare patient community for policies that help those living with a rare disease and their families, and against those that have the potential to cause harm.

Advancing Research

We partner with and support patient communities to develop collaborative research programs with research and medical communities to expand the availability of patient registries and natural history studies, advance data standards, fund research grants, and engage in Patient-Focused Drug Development initiatives.

Improving Care

With our network of Rare Disease Centers of Excellence and through educational partnerships, we are collaborating to improve the availability and standard of clinical care for rare disease patients, support the holistic needs of their families, and alleviate daily burdens of managing a rare disease.

NORD’s RareLaunch Program enabled me to fulfill my previously unattainable goal of launching a foundation. As someone with a rare and orphaned disorder, I enrolled in NORD’s RareLaunch webinar. Through the in-depth knowledge gained and the resources made available, I had the confidence to launch my own 501c(3) foundation. The ongoing support from the knowledgeable RareLaunch team was invaluable in guiding me through every step of the process. Thank you!
—Jo-Ann D’Angelo Founder & Chair, Parry Romberg Foundation

Mentoring Rare Disease Organizations

Learning Through NORD Membership Program

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Starting a Rare Disease Organization

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Become Research Ready

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Launching Registries & Natural History Studies

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Helping Patient-Focused Drug Development

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Additional Areas of Community Support

Corporate Council

The NORD Corporate Council is composed of a select group of leading companies committed to helping people with rare diseases. Membership on the Council demonstrates a commitment to the identification, diagnosis, treatment and cure of rare disorders through programs of education, advocacy, research and service

Living Rare, Living Stronger Patient and Family Forum®

Each year, we bring rare community members together to learn, connect, share, inspire and forge life-long community connections. This patient-centric conference features content on the most critical issues including access, equity, caregiving, and medical breakthroughs.

Rare Diseases and Orphan Products Breakthrough Summit

The NORD Breakthrough Summit brings leaders from patient groups, government, industry and academia together to network, learn, and share fresh insights, expert guidance and innovative ideas.

Partners in Progress

National Partners

Together we are stronger nationally.

We partner with organizations nationally and participate in consortiums toward common goals and aspirations.

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Global Organizations

Together we are stronger globally.

We partner with international organizations and consortiums to drive global progress in policy, advocacy, research and care,

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