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  • Areeg Sweis

A Dive Into NORD, An Organization Supporting Rare Disease Patients & Families

Updated: Aug 21

At times, many people with rare diseases feel as though they don't have much of a support system behind them, given the rarity of their medical conditions. Fortunately, an organization exists that places its focus solely on rare disease patients and their families.


What is NORD?


The National Organization for Rare Disorders, abbreviated as NORD, is a patient advocacy organization that aims to help people with rare diseases and their families and supporting organizations.


As stated by NORD, the organization strives for the “identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.


How did NORD begin?


NORD was formed in 1983 after a group of patients and families dealing with rare diseases felt alone and misunderstood by society. As a result, several organizations created a coalition that strived to bring more attention to those living with rare diseases through the Orphan Drug Act of 1983.


The Orphan Drug Act of 1983 provided financial assistance for the creation of rare disease treatments.


Today, NORD is the leading organization for all things related to a rare disease, as the organization helps to bring patients and their families the connections needed for rare disease management.


Programs and Services provided by NORD


Here’s a quick overview of the program and services provided by NORD:

  • Advocacy: NORD advocates for patients and their families by collaborating with policymakers at the local and federal levels to push for policies that address rare diseases.

  • Mentoring: There are many mentorship opportunities for new and established rare disease patient organizations through webinars, meetings, and toolkits.

  • Education: NORD offers well-research information on all things related to rare diseases, including patient organizations for patients and families.

  • Research: Since 1989, NORD has been running the Research Program that provides grants to push for advances in rare disease treatment and disease-specific registries for research. As of now, there have been two FDA-approved therapies, thanks to this program.

  • Patient Assistance Program: Initiated in 1987, NORD created Patient Assistance Programs, which, as stated by NORD, include “free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, and expanded or emergency access.”

  • Partnerships: NORD has various collaborations with different international organizations with similar missions about rare disease patient advocacy. NORD's international partnerships include the European Organization for Rare Diseases (EURORDIS) and the Japanese Patient Association (JPA).


With 38 years under their belt, NORD advocates for the rare disease community to ensure that patients and families feel understood and supported.


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