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NORD believes in the power of collaboration. It is the foundation upon which NORD was built. NORD works with partners in the patient community, government, academia, and industry who share the ultimate goal of identifying, treating, and curing rare diseases.



The Rare Action Network™ is an advocacy network comprised of patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. Learn more >


European Organization for Rare Disorders

In 2009, NORD entered a strategic partnership with the European Organization for Rare Disorders (EURORDIS), which was just renewed in March, 2015. The goal is to support policies and practices that:

  • facilitate research
  • encourage development of innovative treatments
  • advance awareness and understanding of rare diseases
  • ensure patient access to care
  • encourage a more patient-centered healthcare system
  • help break the isolation of the people living with rare diseases

Japan Patients Association (JPA) Partnership

In January 2012, NORD signed a Memorandum of Understanding with the Japan Patients Association, an organization that represents patients with rare and “intractable” diseases (chronic and not responding to treatment) in Japan.

A declaration of shared commitment to improving the lives of rare disease patients and families, the partnership specifies that the two organizations will share information about current advocacy initiatives and seek ways to increase understanding and communication between rare disease patients and patient organizations in Japan and the U.S.


Frontline Medical Communications

NORD partners with Frontline Medical Communications to provide information about rare diseases to physicians and other healthcare professionals. Recent publications include the following.



NORD collaborates with Medscape on editorial content related to rare diseases and the patient experience. Recent entries include an interview with William Gahl, MD, PhD, Director of the NIH Undiagnosed Diseases Network, on rare disease diagnosis challenges.


Rare Disease Report

NORD began a collaboration with Rare Disease Report in 2015 that focuses on reaching the physician and advocacy communities with important news and insight on rare diseases. Each edition of the Rare Disease Report™ print publication features a NORD column, titled, “Voice of the Community.”  NORD works with its more than 230 member organizations that represent disease-specific patient communities to provide the content.  Information provided by NORD also appears on a designated page on Rare Disease Report’s website.