Groowe Groowe BETA / Newsroom
⏱ News is delayed by 15 minutes. Sign in for real-time access. Sign in

More Than 30 Million Americans Living with Rare Diseases

prnewswire.com
AMGN Amgen is mentioned as a Champion Level sponsor for NORD's Rare Disease Day, indicating support for rare disease research and awareness without direct commentary on the company's performance. SNY Sanofi is listed as a Champion Level sponsor for NORD's Rare Disease Day, showing support for the cause but not providing specific business insights. AGIO Agios Pharmaceuticals is mentioned as a Partner Level sponsor for NORD's Rare Disease Day, indicating support for rare disease awareness and research. ASND Ascendis is listed as a Partner Level sponsor for NORD's Rare Disease Day, showing support for the organization's awareness campaign. DVA Boehringer Ingelheim is listed as a Partner Level sponsor for NORD's Rare Disease Day, indicating their support for rare disease initiatives. INCY Incyte Corporation is listed as a Partner Level sponsor for NORD's Rare Disease Day, indicating their support for the rare disease community. NVS Novartis is listed as a Partner Level sponsor for NORD's Rare Disease Day, showing support for rare disease research and awareness. PFE Pfizer Inc. is mentioned as a Partner Level sponsor for NORD's Rare Disease Day, indicating their support for rare disease awareness and research. REGN Regeneron Pharmaceuticals is listed as a Partner Level sponsor for NORD's Rare Disease Day, showing support for rare disease initiatives. UCB UCB is mentioned as a Partner Level sponsor for NORD's Rare Disease Day, indicating their support for rare disease research and awareness.

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:

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®)