More Than 30 Million Americans Living with Rare Diseases

NORD Calls on Nation to “Show Your Stripes^®” on Global Rare Disease Day^®, Feb. 28

NORWELL, Mass., Feb. 23, 2026 /PRNewswire/ — The National Organization for Rare Disorders (NORD^®) is calling attention to rare diseases as a significant and growing public health challenge affecting more than 30 million Americans. Fewer than 5 percent of the more than 10,000 known rare diseases have an approved treatment, underscoring the urgent need for research, innovation, and policy support.

According to NORD research and other published studies, many families spend five to seven years seeking an accurate diagnosis, enduring medical uncertainty, misdiagnoses, financial strain, social isolation, and few available treatment options. The burden extends beyond individual families: the National Center for Advancing Translational Sciences (NCATS) estimates that annual direct medical costs for rare diseases may reach $400 billion, rivaling those of cancer, heart failure, and Alzheimer’s disease.

As the official U.S. sponsor of Rare Disease Day^®, led internationally by EURORDIS-Rare Diseases Europe, NORD is mobilizing communities nationwide on February 28 to “Show Your Stripes.” The campaign is designed to raise awareness and funds, improve diagnosis, accelerate research for new treatments, and stand in solidarity with the estimated 1 in 10 Americans living with one or more rare diseases.

NORD Congressional Briefing
To jump-start activities leading into Rare Disease Day, NORD will host a congressional briefing, “Patient Advocacy Driving Innovation for People Living with Rare Diseases,” from 10–11:30 a.m. on Feb. 24 at the Capitol Visitor Center (SVC 203) in Washington, D.C. The event will highlight how patient advocacy and clinical innovation are shaping rare disease care and the essential role federal policy plays in sustaining progress. Pam Gavin, CEO of NORD, will deliver remarks.

How to Show Your Stripes
The zebra is the official mascot of the rare disease community, inspired by the medical school proverb: “When you hear hoofbeats, think horses, not zebras.” Rare disease patients are the “zebras” whose conditions are often overlooked or misunderstood.

This year, NORD invites individuals, families, physicians, schools, employers, communities and businesses to participate in its “Show Your Stripes” national awareness campaign through a range of advocacy initiatives. Activities taking place include: patient advocacy events at state capitols and at NORD^® Rare Disease Centers of Excellence hospitals and research institutes nationwide, community celebrations, landmark lightings, and social media activations. Individuals and companies are encouraged to wear zebra stripes and, “Show Your Stripes” for the 1 in 10 Americans living with a rare disease, and to participate in at least one of the following activities:

Make a dedication on NORD’s Faces of Rare dedication wall honoring someone living with a rare disease.
Use NORD’s schools, workplace or community playbooks to learn how you can engage your network in recognizing Rare Disease Day.
Review the NORD State Report Card^® to see how your state ranks across nine policy areas affecting individuals and families with rare diseases.
Healthcare professionals are encouraged to participate in NORD’s Earn Your Stripes: Rare Disease CME Challenge from February 23 through March 31, by completing accredited courses on rare disease care and diagnosis.
Attend Rare Disease Day events in-person or virtually through NORD’s national event calendar.
Nominate a landmark to Light Up for Rare and ask for buildings and monuments in your community to illuminate in Rare Disease Day colors.
Spread awareness online by using NORD’s social media toolkit.
Support the community by donating to advance research and patient support programs.

Celebrating Our Sponsors: NORD extends gratitude to the organizations whose Rare Disease Day sponsorship supports progress for the rare disease community.

Champion Level: Amgen, Sanofi, and Takeda
Partner Level: Agios Pharmaceuticals; Ascendis; Boehringer Ingelheim; CareMed Specialty Pharmacy; Chiesi Global Rare Diseases; ConnectMed360; Deciphera, An ONO Pharma Company; Deep Intent; Incyte Corporation; Ipsen Biopharmaceuticals; Kyowa Kirin North America; Novartis; Pfizer Inc.; Regeneron; SpringWorks Therapeutics; Travere Therapeutics; and UCB.
Continuing Medical Education: Medlive

About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD^®) is a leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD®)

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