For Patient Organizations | NORD

Rare disease community members gathering together.

Starting a Rare Disease Organization

Through our Forming a Foundation curriculum, individuals can learn how to start a leading rare disease organization. Through module-based programming, you can learn and develop at your own pace.

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Empowering Your Rare Disease Organization

We provide organizations and leaders with guidance, templates, resources and opportunities to grow their organization’s impact and footprint in advocacy and patient-centered research and care.

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Becoming Research Ready & Activated

We provide education, information and tools needed to advance patient-centered research for your disease and patient community. Learn about starting registries, natural history studies and more.

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Informing Regulatory Science

We work with patient communities and the FDA to host Patient Listening Sessions and Externally-Led Patient Focused Drug Development Meetings to inform Centers and reviewers about patient experiences and preferences.

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Building Diverse, Equitable and Inclusive Rare Disease Communities

We educate and empower leaders of nonprofit organizations to implement strategies for DEI, to remove barriers for marginalized populations with rare disease and expand who is served.

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Uniting the Rare Cancer Community

Our Rare Cancer Coalition® brings together member organizations working in rare cancers to address the issues facing the greater rare cancer community through capacity building, networking and peer-to-peer mentoring.

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Listings in Our Organizational Database

Our online database helps families find organizations that can assist them with information, resources, support services and care. Organizations listed in the database demonstrate that they:

  • Provide free information and/or services helpful to individuals and families affected by one or more rare diseases, and are non-commercial
  • Have a current website
  • Are transparent regarding sponsors or sources of funding
  • Are transparent regarding sources and/or reviewers of medical information provided on their websites and/or publications.

Contact Us to Become Part of the Rare Disease Organization List

National Organization for Rare Disorders