Washington, D.C. | October 25-27, 2026
Register now for the NORD® Rare Diseases & Orphan Products Breakthrough Summit® — the leading event for rare disease advocates, industry leaders, researchers, and policymakers.
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Many rare diseases have significant unmet research needs, yet students and early-career trainees may have limited exposure to the field. NORD's new online course, Rare Research Launchpad provides an entry point to explore career opportunities and discover how their skills can contribute to rare disease research.
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NORD is proud to honor biopharma leaders, medical scientists, and patient advocates whose innovation, research, awareness efforts, and advocacy are advancing progress and improving the lives of more than 30 million Americans living with rare diseases.
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Starting in 2027, community engagement or work requirements will apply to some Medicaid enrollees. NORD has explainers for patients and caregivers, plus recommendations for state and federal policymakers.
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Get help with access to medication, diagnostics, caregivers support, and other needs through NORD's RareCare® programs.
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Access our comprehensive database to view reports on more than 1,400 rare diseases.
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NORD® Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients.
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Assist researchers throughout the world better understand and treat rare diseases by enrolling in our registry and sharing your experiences.
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Adults living with rare disease and caregivers can share their lived experiences to help drive positive change.
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Discover how your rare experiences can help researchers and lead to a brighter future.
Learn MoreYou or a loved one has received a diagnosis. Now what? Gaining knowledge, connecting with advocacy organizations, and learning about treatment at places like the Centers for Excellence are the next steps.
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When: October 1 @ 4:00 pm - October 1 @ 8:00 pm
When: October 3 @ 1:00 pm - October 3 @ 2:30 pm
When: October 3 @ 1:00 pm - October 3 @ 2:30 pm
When: October 4 @ 12:00 pm - October 4 @ 1:30 pm
We help inform and advocate for legislation and policies that reflect the needs of rare disease patients and their families.
We provide information about rare diseases, patient organizations and other resources. We also promote awareness of rare diseases among physicians and other medical professionals.
We pioneered Patient Assistance Programs in 1987. Today, NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, expanded or emergency access, and more.
Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. That’s why we provide capacity building and mentorship services to start-up and established organizations.
Our grant programs have resulted in numerous published advances and at least two FDA-approved therapies.
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 mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy.
NORD helps drive more effective government policies by elevating the voice of the rare disease community.
Patient advocacy organizations play a vital role in helping people with rare diseases live their best and fullest lives. We can help you find one or even start your own.
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