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Get Involved with the Rare Disease Community | NORD
Help People with Rare Disease | NORD
Get involved in rare disease community

Raise Awareness and Funds

Participate in Rare Disease Day

Rare Disease Day is observed on the last day of February each year. Share your story, participate in global awareness, or find an event in your community to build support.

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Running for Rare

Join NORD’s signature charity running program to raise awareness for rare diseases, fundraise for NORD programs for undiagnosed patients, and contribute to a team of individuals seeking to make a meaningful difference.

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School Awareness and Fundraising

We work with student organizations across the country to facilitate opportunities for the next generation to learn about rare diseases and the patient experience. Join a Students for Rare chapter today.

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Attend an Upcoming Event

NORD hosts many events, webinars, and conferences throughout the year that you can attend, elevate, or lend your support to. View our interactive calendar.

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Join the Policy and Advocacy Taskforce

Are you passionate about rare diseases and public policy? Are you interested in getting more involved in federal or state policy, or both? Our National and Regional Policy and Advocacy Taskforces provide forums for volunteers to be more deeply involved in grassroots advocacy efforts and to fight for legislative solutions.

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Join Us

Rare disease community members at event.

Rare Action Network®

The Rare Action Network (RAN) is the nation’s leading advocacy network working locally to improve the lives of the 30 million Americans living with a rare disease. Join more than 18,000 rare community members to get involved in raising awareness, advocacy, fundraising, participating in local events, sharing your story, and creating a lasting impact.

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Find a Patient Organization

Connect with a patient organization for resources, community, and opportunities to lend or gain support.

Rare disease community members gathering together.

Stay Informed

Sign-up for our mailing list for a variety of newsletter options! Keep up to date on what is happening at NORD and in the rare disease community.

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Health Care Professionals

NORD supports medical professionals and researching working in the rare disease field with critical information, continuing education, research support, and networking opportunities. Learn more.

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Research

NORD elevates research and companies working towards treatments and cures for rare diseases through grants, translational research, patient-focused data collection, and our IAMRARE Registry Program, and other key initiatives.

It always energizes me to get involved and do more. For lack of time, we often can't be present in all the wonderful projects NORD creates; however, knowing that they are there, and that we have a wide context to work from is always empowering.
—Rachel Gomel, PSC Partners Seeking a Cure

Find a Rare Career

Careers at NORD

NORD is committed to building a culture where everyone can thrive. Take the next step in your career and join the NORD team!

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Intern at NORD

Explore a career helping those with rare diseases! Discover your passion and build your career foundation at NORD.

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Jobs at Patient Advocacy Organizations

Search paid and volunteer positions at patient advocacy organizations. Dive into important work on the frontlines of the rare disease community.

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Partner with NORD

Member

Join over 330 peer organizations as part of the NORD network! Access up-to-date resources, critical opportunities, and take the next step in research or advocacy.

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Industry

Become part of a select group of leading companies working alongside NORD who are committed to helping people with rare diseases.

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National Organization for Rare Disorders