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.
In 2009, NORD entered a strategic partnership with the European Organization for Rare Disorders (EURORDIS). 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
Current highlights of this partnership include creation of disease-specific online patient communities at www.rarediseasecommunities.org.
In addition, NORD and EURORDIS host a public policy advocacy blog at www.rarediseaseblogs.net.
And, working in partnership with EURORDIS and other national alliances around the world, NORD is the sponsor in the U.S. for Rare Disease Day, an annual awareness day that takes place on the last day of February each year.
In January 2012, NORD signed a Memorandum of Understanding with the Japan Patients Association, an organization similar to NORD that represents patients with rare and "intractable" diseases (chronic and not responding to treatment) in Japan.
Read press release about this.
Read the MOU.
NORD works closely with government partners seeking to:
- promote innovative research
- facilitate the development of safe, effective treatments and
- ensure patient access to a high quality of diagnostic and treatment services
NORD’s government partners include:
- The National Institutes of Health and its Office of Rare Diseases Research
- The Food and Drug Administration and its Office of Orphan Products Development
- The Social Security Administration and its Compassionate Allowances Program