National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 350+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). All NORD programs are focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. NORD is the official U.S. sponsor of Rare Disease Day, an international observance day held on the last day of February each year. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseases.org/rare-disease-day. To learn more, please visit the NORD website at www.rarediseases.org. You can also follow NORD on X at @RareDiseases.www.rarediseases.org
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Search complete. 2 mentions across 2 episodes found for "National Organization for Rare Disorders (NORD)".
Sep 27, 2026
Connie MontgomeryGUEST
Before now, it didn't really, and it does not really exist.
Connie MontgomeryGUEST
We have various organizations like NORD, the National Organization of Rare Disorders here in the United States.
Connie MontgomeryGUEST
And then we have in other countries like in India, ORDI, the Organization of Rare Disorders India.
Connie MontgomeryGUEST
However, we rarely have those organizations that have each other communicating and talking to one another.
Wayne PinesHOST
FDA has reinforced its commitment to rare diseases many times over the past year, and this administration has been very supportive of the need for flexibility in designing and evaluating clinical trials.
Wayne PinesHOST
Personally, I've served as a consultant for many years, or I did, at the National Organization for Rare Disorders.
Wayne PinesHOST
I helped organize its annual summit, so I've always had a commitment to the cause of rare diseases.
Wayne PinesHOST
So let's meet our guests.