Rare Disease Clinicians & Researchers

A Patient-Centered Approach to
Research and Treatment

We support clinicians and researchers so they can advance research and treatment that will enable
people living with rare diseases to live healthier and fuller lives

An important goal of NORD is to address the diagnostic odyssey, to address the lack of standardization of care-management and lack of coordinated multi-disciplinary care… So the overarching goal is to increase knowledge sharing across all rare diseases and across the country to really accelerate the progress in rare diseases with regards to diagnosis treatment and research.
—Olaf Bodamer, MD, PhD, Associate Chief of Genetics and Genomics at Boston Children’s Hospital

Supporting Clinicians

Rare Disease Information

Our extensive rare disease reports and video resources can help your patients better understand a new diagnosis or navigate living with their rare disease.

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Continuing Medical Education (CME)

We partner to provide healthcare professionalswith accredited online CME courses on rare diseases.

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Rare Disease Centers of Excellence

NORD designates and partners with Rare Disease Centers of Excellenceto improve collaboration and the delivery of care for rare diseases patients.

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Supporting Researchers

Research Grants

With the support of our donors, we are able to offer seed grants to researchers working in rare diseases. This funding helps in the collection of preliminary data needed to attract future grants and research contracts.

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Research Studies

Through our IAMRARE Registry Program, we partner with patient and research communities to collect clinical-grade patient-reported outcomes data.

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Research Collaborations

We are partnering on key initiatives to help advance the collection of real-world and patient-reported data, and to advance data standards and interoperability.

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Lend your Expertise

We’re asking for your help so people with rare diseases can live better and fuller lives. Join our network of medical professional and academic volunteers and learn about opportunities to lend your expertise.

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Annual Events and Initiatives

Living Rare, Living Stronger

We bring people living with rare diseases and their families together around the country to provide education and connections with the support of medical professionals.

Rare Disease Day

Held on the last day of February, Rare Disease Day is a global campaign to raise awareness of rare diseases and advocate for health equity.

Rare Diseases & Orphan Products Breakthrough Summit

Each year, top leaders from the FDA, NIH, organizations, industry, payers, medical and research institutions, meet to advance discussions and solutions on issues of critical importance to those living with and working in rare diseases.

Recent Publications

2020 Rare Diseases Report: Rheumatology


2020 Rare Diseases Report: Cancers


2019 Neurological Rare Disease Special Report


National Organization for Rare Disorders