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The Importance of NORD’s Membership Criteria

Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and among stakeholders in the rare disease community – and requiring all members to meet Membership criteria helps us maintain that reputation. By adopting a demanding set of criteria, NORD ensures that our 501(c)3 patient advocacy Member Organizations embody high ethical standards and are free from any outside influences that might interfere with the voice of the patients we seek to represent.

We are proud to announce our new Membership levels for 2020!

Platinum level

Platinum level Membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries. (All pre-existing Member Organizations which met these standards in 2019 will be recognized as Platinum level* members in 2020!) For a full list of NORD’s Platinum level benefits and services, click here! New organizations wishing to qualify for Platinum Membership – and to receive Platinum level benefits – must meet our highest standards of excellence for NORD Member Organizations. See below for the Platinum level Membership criteria.
* Any organization engaged in medical education, funding research, RFP review, coordinating a registry and the like must have a Medical Advisory Board and apply at the Platinum level.

Gold level

Our new Gold level of Membership is available for those 501(c)3 tax-exempt organizations that are NOT currently engaged in medical education, research funding, RFP review, registry coordination, or any work involving a Medical Advisory Board. This level of Membership allows patient support organizations to gain access to NORD’s community, resources, and services. See below for the Gold level Membership criteria.

Criteria for Membership

Please see below for the list of qualifications associated with each our Membership levels. Organizations applying for NORD Membership will need to be able to meet the relevant qualifications shown.

Not sure your patient advocacy organization can qualify? We can help! Please email NORD’s Membership Team for assistance with meeting these qualifications. Our Team can provide your organization with templates for developing your:

  • Bylaws
  • Privacy Policy
  • Operating Budget
  • Conflict of Interest Policy for Board and Staff
  • Medical Advisory Board Policies and Procedures
QualificationPlatinumGold
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.XX
Proof of tax-exempt status pursuant to Section 501(c)(3) of the Internal Revenue Code, or the international equivalent of this statusXX
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.XX
Bylaws must detail the process for electing board members, as well as board term limits and a maximum number of consecutive terms a board member may serve.X
Programs that engage patients, caregivers, medical professionals and supporters in one or more of the following ways: research, professional education, public education & health promotion, health services, community services, advocacy and social action.XX
An up-to-date website that fully reflects your mission and your diverse patient voices.XX
A minimum of 5 Board Members that meet at least twice annually (in-person or by conference call)X
A minimum of 3 Board Members that meet at least twice annually (in-person or by conference call)X
A minimum of 3 Medical and/or Scientific Advisors; a policy and procedures document for expectations and management of this Medical Advisory Board. Organizations have two years from approval of their membership to meet this standard.X
Any medical information your organization provides must be medically reviewed and vetted for accuracy by scientific or medical advisors.XX
A Conflict-of-Interest Policy for Board and Staff. NORD Member Organizations must implement a conflict-of-interest policy applicable to the board and key staff, reviewed and signed on an annual basis. Your conflictof-interest policies must clarify what a conflict of interest is, what board members and employees must do to disclose possible conflicts of interest, and what board members and employees should do to avoid acting inappropriately if and when a conflict of interest does arise. The conflict-ofinterest policy should clearly define a consistent process for dealing with conflicts including:
  • Defining responsible parties, financial interest
  • Determining whether a conflict of interest exists
  • Procedures for addressing the conflict of interest
  • Violations of the conflicts-of-interest policy
  • Disclosure and recusal, consequences for violations
XX
A Board-approved Annual Operating BudgetXX
Your Board of Directors must not directly or indirectly have a significant business relationship with your organization which might affect independence in decision making – including, but not limited to employment by a corporation or for-profit enterprise with a vested interest in your disease state, organization and policiesXX
A Privacy Policy that protects the identity of the patients and families for whom your organization servesXX
Your organization must disclose on your website how donations are used. This may involve posting the Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries.XX

Is your organization based outside the United States?

NORD can work with you in one of two ways.

  1. Rare disease-specific international organizations can join at the Platinum Level as “International Members”.
  2. We also maintain an International Partnership Membership level for umbrella organizations based outside of the US. If your organization would benefit from a strategic partnership with NORD, this relationship can be formalized in a Memorandum of Understanding that outlines a shared commitment to improving the lives of rare disease patients and families through international collaboration. Organizations interested in International Partnership should contact Debbie Drell, Director of Membership at [email protected]