NORD Member Organizations

Criteria for Organizational Membership

NORD is a unique federation of organizations that share a common interest in helping people with rare diseases. These organizations have learned that they speak with a louder voice when they work together, even though their individual missions may differ in specific details.

NORD member organizations share the benefit of representation in Washington, DC, through the efforts of NORD’s Vice President for Public Policy in its Washington office. They also receive frequent briefings from NORD on political and medical news, as well as guidance on topics related to accomplishing their organizational goals.

To view a list of current organization members with direct links to their websites, click here.

• A Direct Line to Washington: Member organizations work closely with NORD’s Vice President for Public Policy in the NORD Washington, DC, office and receive regular news about developments of interest to the rare-disease community.
  
  
• Representation at Medical Meetings: NORD staff members attend several professional medical meetings each year, and member organizations are invited to submit their brochures and other publications for the NORD display booth.
  
  
• RFP Postings: Under the "Research" section of NORD's website, Member Organizations are invited to post research funding opportunities to the scientific community. NORD's website www.rarediseases.org receives approximately 140,000 visits per month, providing great exposure for an organization's research program.
  
  
• Conference and Special Events Promotion: Member Organizations are invited to post their sponsored events such as patient conferences, symposiums, and community awareness campaign on NORD's website www.rarediseases.org. Frequently visited by patients, healthcare professionals and researchers within the rare disease community, NORD's website is a valuable tool in advertising special events.
  
  
• Guidance on Non-Profit Governance: Member organizations are encouraged to utilize the expertise and knowledge of NORD staff members on matters related to effective management of a non-profit organization.
  
  
• Informative Publications: Member organizations receive two publications, the Orphan Disease Update newsletter and NORD Online, a news bulletin that provides timely information on health-related issues.
  
  
• Networking: Patients who join NORD’s Networking Program are encouraged to contact a disease-specific member organization and are told that their names will be shared with a NORD member organization if there is one representing their disease. Similarly, when NORD is asked by a researcher to put out a “clinical broadcast” to notify patients of a current clinical study, the appropriate member organization also will be notified of the research.
  
  
• Voting Privileges: Member organizations are eligible to vote for the NORD Board of Directors. National members may vote on agenda items at the NORD annual meetings and for all Board nominees. Associate members may vote for associate representatives, and at-large representatives, on the Board.
  
  
• Mark of Distinction: To be a member of NORD indicates that an organization has achieved a level of distinction that is noteworthy. Membership requires meeting certain criteria specified in the NORD bylaws, and generates trust and recognition. NORD’s member organizations are listed on its letterhead and in many of its publications. Click the link below to view a list of organization members.

For more information about the requirements and benefits of being a NORD Member Organization, contact solivo@rarediseases.org.