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Apply for Membership

Thank you for your interest in NORD membership for patient advocacy organizations.  You are one step away from receiving the many benefits and resources NORD provides its members, including support in the areas of drug development, board management, organizational governance, federal policy and regulatory affairs, research, fundraising, capacity building, and more.  NORD’s Membership Team looks forward to supporting you during the application process.

Next Steps
  1. Once all required documentation is received, your application will be reviewed by the Membership Committee who will make a recommendation to the Board of Directors.
  2. The review takes approximately 4-6 weeks, after which you will be notified of the decision.

We look forward to working with you to help patients living with rare diseases!


Membership annual dues are based on organization’s operating budget
Less than $25,000 Annual Dues = $50
Between $25,001-$50,000 Annual Dues = $75
Between $50,001-$100,000 Annual Dues = $150
Between $100,001-$250,000 Annual Dues = $200
Between $250,001-$500,000 Annual Dues = $300
Between $500,001-$750,000 Annual Dues = $400
Between $750,001-$1,000,000 Annual Dues = $500
Between $1,000,001-$2,000,000 Annual Dues = $700
Greater than $2,000,001 Annual Dues = $900

If your organization is having difficulty meeting the membership criteria please contact our membership team at membership@rarediseases.org 

Membership Criteria

Learn more about what is needed to join NORD’s network of over 280 dedicated rare disease patient organizations!

Application

National Organization for Rare Disorders Membership Application

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Thank you for your interest in NORD membership for patient advocacy organizations.  You are one step away from receiving the many benefits and resources NORD provides its members, including support in the areas of drug development, board management, organizational governance, federal policy and regulatory affairs, research, fundraising, capacity building, and more.  NORD's Membership Team looks forward to supporting you during the application process.


International membership is for organizations based outside of the U.S.


Only include if your organization uses an abbreviation or acronym publicly

Organization Address








To be listed on NORD website



If your organization is on Facebook, enter the URL here.

If your organization has a twitter handle, enter it here.

If your organization is on LinkedIn, enter the URL here.

Example: NORD users #raredisease regularly

If your organization is on instagram, enter the handle here
Executive Leadership
Please provide the contact information for your executive leader. This may be the CEO, Executive Director, Executive Vice President or Board Chairman if you do not have someone on staff.








Social Media Contact









Medical/Scientific Advisor









Primary Contact for Membership

Please specify who you would like to handle questions about your membership application.










Additional people
Please list any additional people from your organization you would like to receive NORD's monthly e-news and member communications.






Application Questions


Select Yes if your organization is recognized as a 501(c)(3) not-for-profit organization with tax-exempt status (or the foreign equivalent).
































Total annual revenue


Please confirm that your organization meets all of NORD’s criteria for membership. 









Application Checklist

The following documents are required to be submitted alongside your application:
  • Proof of 501(c)(3) tax-exempt status
  • A copy of your organization's by-laws (dated and signed). 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

  • The names and addresses of your Board Members
  • The names and addresses of your Medical and/or Scientific Advisors (NORD requests that partners have at least three advisors). Organizations have two years from approval of their membership to meet this standard
  • A copy of your operating budget
  • A copy of your Conflict-of-Interest Policy for Board and Staff (which defines COI and provides a policy to manage conflicts)
  • A copy of your Privacy Policy that protects the identity of patients and families
  • A link to your Financial Disclosure; where you link to Form 990, an annual report, or other appropriate information on financials, income, expenses, programs and beneficiaries
  • Organization's logo
The following are recommended to be submitted alongside your application:
  • Samples of educational materials and/or annual report

Please upload these documents below













Please enter the URL where the public can find your Form 990, annual reports and other information about the organization's financials