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Benefits of Membership

Join NORD to become a “visible member” of a large, collective voice on behalf of patients with rare diseases.  As a member of the NORD membership community, we ask you to join the conversation and bring the power of more voices together to achieve mutual goals on behalf of patients and families affected by rare diseases. With broad representation on a geographic and disease-specific basis, NORD can have greater influence on advocacy efforts that benefit all patients with rare diseases.


  • Advocacy – NORD membership links the influence and relationships of NORD leadership with the knowledge, expertise and patient connections of member organizations to represent and help achieve mutual goals for the rare disease community.
  • Policy Development - NORD represents the interests of its member organizations and all patients with rare diseases through its support of legislative and regulatory policies that improve patient access to care and promote innovation of new therapies.

NORD maintains an aggressive public policy agenda that continues to focus on such key issues as maintaining Health Care insurance reforms and elimination of annual and lifetime caps, expanding SSA Compassionate Allowances, achieving coverage of medical foods, and supporting development of new therapies

  • Critical Issues Analysis - NORD provides members with analyses of legislative and regulatory activity and public policy that will impact the rare disease community
  • Education – Member organizations are supported with ongoing educational webinars on policy issues and the public policy process, as well as access to senior level representatives within the FDA, NIH, CMS, and other governmental agencies.
  • Opportunities to Connect – NORD provides member organizations with the opportunity to connect and gain access to the knowledge base within the membership community and to learn and share best practices on issues of similar concern. These can be related to public policy, or to developing their organization, building capacity and meeting the needs of the patients they represent.
  • Research Support - NORD supports the research efforts of member organizations through information-sharing related to sources of research funding.  NORD also administers a limited number of research grants.
  • Member Organization Visibility – NORD partners with its members to create greater awareness for them throughout all NORD communications materials and the website, through listing of member activities and events, and attendance at select medical meetings. Patients who contact NORD are also referred to the appropriate member organization.
  • Voting Privileges – National Member Organizations are eligible to vote for the NORD Board of Directors, as well as on agenda items at the NORD annual meeting


If you are the leader of a patient organization considering membership, please submit this membership interest form.

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