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Apply for Organizational Membership

Criteria for Organizational Membership in NORD

NORD welcomes nonprofit patient organizations who advocate on behalf of patients with rare diseases to join their membership community and be part of a growing visible force on behalf of the large patient community with rare diseases.

NORD offers two levels of organizational membership:

  1. National Membership:  tax exempt 501(c)(3) organizations become member in the NORD membership community with voting privileges.
  2. Associate Membership: patient organizations who meet the following criteria: (1) have applied for 501(c)(3) non-profit status; (2) are local rather than national service agencies, or chapters of national organizations; or (3) are based outside the U.S. Associate members participate in the NORD membership community, except for voting privileges.

How to Apply for Organizational Membership

  1. To apply for NORD membership, patient organizations are asked to complete the application form and submit it with the following documentation as noted under the Application Process below. Proof of tax-exempt status pursuant to Section 501(c)(3) of the Internal Revenue Code, except as noted below for certain Associate Membership categories.
    • National Membership: Proof of 501(c)(3) tax exempt non-profit status
    • Associate Membership: Proof of filing for 501 (c)(3) tax exempt non-profit status, with approval anticipated within one year. For organizations that are local or chapters of  US national organizations, or are organizations who are based outside the U.S., submit documentation of status.
  2. Dated by-laws, with the following requirements:
    • Mission and programs compatible with NORD’s goals of being patient-centered, and advocating on behalf of patients in the rare disease community.
    • Names and addresses for a minimum of five board members. A committee structure for the board is recommended.
    • Minimum of two board meetings annually with a majority in attendance.
    • Minimum of three medical/scientific advisors in place, although a larger committee is recommended.
    • Annual Budget approved by the Board.
  3. Policy requirements:
    • Policies on conflict-of-interest for Board and Staff.
    • Privacy policy that protects the identity of patients and families.

In addition, patient organizations applying for NORD membership are asked to send samples of any of the following materials as an example of the work of their organization:  Annual Report and/or samples of educational materials that are distributed to the public.

The completed application and required documents are to be sent electronically, or by mail, to:
Attn: Susan Olivo
55 Kenosia Avenue
Danbury, CT   06810

The application is reviewed by NORD’s Membership Committee and the Medical Advisory Committee before presenting to the Board of Directors. After the review, which takes approximately 6-8 weeks, you will be notified in writing of the decision regarding membership in NORD.  We sincerely appreciate your interest in becoming a member of NORD and joining together with us as part of our membership community to work on behalf of patients with rare diseases.

The NORD Membership Committee reserves the right to deny membership or to discontinue membership of any organization found to be out of conformance with NORD’s membership policy.

Download the membership application form.

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