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Membership Criteria

NORD’s organizational membership community provides a united force for advocacy, research and medical advancements, policy successes, public awareness and support for the 30 million Americans living with rare diseases. Our organizations represent a broad range of disease-specific communities and provide leadership to advance the goals we all share.

Criteria for Membership

For National and International Membership:

  • A mission and programs that are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community.
  • Proof of tax-exempt status pursuant to Section 501(c)(3) of the Internal Revenue Code, or the international equivalent of this status
  • Dated by-laws showing that your mission and programs are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community
  • A minimum of 5 Board Members that meet at least twice annually (in-person or by conference call)
  • A minimum of 3 Medical and/or Scientific Advisors
  • A Board approved Annual Operating Budget
  • A Conflict-of-Interest Policy for Board and Staff
  • A Privacy Policy that protects the identity of the patients and families your organization works with

International Partnership is for umbrella organizations operating outside of the U.S. that NORD has a strategic partnership or Memorandum of Understanding with that outlines a shared commitment to improving the lives of rare disease patients and families through collaboration.

Organizations interested in International Partnership should contact

Melanie Gibson, Director of Membership at mgibson@rarediseases.org

Categories of Membership

  1. National Members are U.S. based patient organizations with 501(c)(3) tax-exempt status
  2. International Members are organizations operating outside of the U.S. that have globally recognized tax-exempt status
  3. International Partners are rare disease umbrella organizations operating outside of the U.S. that have a strategic partnerships with NORD

Recommended Items

The following are recommended to be submitted alongside your applications:

  • A copy of your privacy policy that protects the identity of patients and families.
  • Samples of educational materials and/or annual report.
  • A high resolution organizational logo