Criteria For National Organizational Membership In NORD

The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations and individuals with rare "orphan" diseases. NORD has a responsibility to ensure that all member organizations observe ethical standards and have responsible governance in order to maintain the public's trust in charitable institutions. NORD has two classes of organizational membership: "National" organizations and "Associate" organizations.

To qualify for National organization membership in NORD, a non-profit voluntary health organization must be national in scope, and its' board membership must reflect this scope. A Board that is comprised of members from only one geographic area, or primarily one family, does not reflect national representation, but may qualify as an "associate organization."

NORD has adopted the following requirements for National organizational membership:

Requirements: NORD National Organizational Membership

1. Proof of IRS non-profit status (i.e., 501(c)3 documentation).
2. Articles of Incorporation that conform to the standards of charitable institutions, and are not structured to serve people of a specific political, religious, or racial identity.
3. Dated Bylaws.
4. Names and addresses of geographically diverse Board members with identified committee service (the Board must have working committees). A minimum of five board members is required, and more is encouraged.
5. A minimum of three board meetings annually with a majority in attendance. At least one annual meeting should be face-to-face, and others can be electronic meetings.
6. Names and contact information for Medical/Scientific Advisors (a minimum of three members is required, and more is encouraged).
7. Copy of your organization's most recent IRS 990 or 990EZ filing.
8. Copy of the organization's financial statement and/or audit report for the most recent fiscal year (which is required to be available to the public on request).
9. An annual report (which must be made available to the public on request).
10. Samples of educational materials that are distributed to the public (e.g., pamphlets, newsletters, etc.)
11. The agency's Board of Directors must approve each annual budget.
12. An adequate privacy policy that protects the identity of patients and families.
13. Copy of policies on conflict-of-interest for board and staff.
14. Mission and programs must be compatible with NORD's.

Recommendations: NORD National Organizational Members

The following points are strongly recommended for National member organizations:

• An organization's general membership should elect its Board members (rather than the Board electing Board members).
  
  
• The organization's Website should include the agency's annual report, mail and phone contact information, and electronic access to the organization's IRS 990 filings (e.g., a link to Guidestar, or how to request financial data by mail).
  
  
• Accurate and truthful solicitations and educational materials that do not give medical advice (e.g., educates people about many medical options and does not recommend any specific option).
  
  
• Spends no more than 25 percent of contributions on fundraising and administration (combined).
  
  
• NORD recommends that staff should not serve as a voting member on the Board of Directors, but some organizations may allow one staff person to serve on the Board if the compensated member does not serve as an officer or treasurer, nor vote on financial matters that could be perceived as a conflict-of-interest.
  
  
• Board members may be reimbursed for direct expenses related to their work (e.g., travel costs to and from Board meetings), but cannot be paid for their service on the Board.

Criteria For Associate Organization Membership

Associate organization membership allows those organizations that do not yet qualify for National membership, to enjoy similar membership benefits except for voting privileges. Organizations and support groups that have applied to the IRS but are not yet tax exempt, or are based outside the Untied States, are local rather than national service agencies, clinics, chapters of national organizations, or do not yet conform to all the requirements for National organizational membership, may qualify as "Associate Organization Members." The following documentation is required for Associate Membership applications:

1. Names and addresses of Board members (minimum three).
2. A minimum of three board meetings annually with a majority in attendance.
3. Names and addresses of Medical/Scientific Advisors (a minimum of three members).
4. An annual report (made available to the public on request).
5. Samples of educational materials that are distributed to the public.
6. An adequate privacy policy that protects the identity of patients and families.
7. Mission and programs must be compatible with NORD's.

Application Process

NORD's Membership Committee reviews the required membership application and documents. The Committee may ask NORD's Medical Advisory Committee (MAC) to review the application, the qualifications of the applicant's Medical/Scientific Advisory Board, and the scientific accuracy of publicly disseminated materials. The recommendations of the Membership Committee are given to NORD's Board of Directors. The Board votes on applications for organizational membership at its next Board meeting. You will be notified of the Board's decision.

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 standards.

National Application

Associate Application