{"id":287861,"date":"2026-02-23T13:40:58","date_gmt":"2026-02-23T18:40:58","guid":{"rendered":"https:\/\/rarediseases.org\/?p=287861"},"modified":"2026-03-26T11:47:42","modified_gmt":"2026-03-26T15:47:42","slug":"rare-disease-day-2026","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-disease-day-2026\/","title":{"rendered":"More Than 30 Million Americans Living with Rare Diseases"},"content":{"rendered":"

NORD Calls on Nation to \u201cShow Your Stripes\u201d on Global Rare Disease Day, Feb. 28<\/h3>\n

NORWELL, Mass.,\u00a0FEB.\u00a023, 2026<\/span><\/b>\u00a0<\/span><\/b>\u2013<\/span><\/b>\u00a0The National Organization for Rare Disorders (NORD\u00ae<\/sup>) is calling attention to rare diseases as a significant and growing public health challenge affecting\u00a0more than 30 million\u00a0Americans.\u00a0Fewer 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

According to\u00a0<\/span>NORD\u00a0research<\/strong><\/span><\/a>\u00a0and other published studies,\u00a0many families spend five to seven years seeking\u00a0an accurate\u00a0diagnosis, 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\u00a0$400 billion, rivaling those of cancer, heart failure, and Alzheimer\u2019s disease.<\/span>\u00a0<\/span><\/p>\n

As the official U.S. sponsor of Rare Disease Day\u00ae<\/sup>, led internationally by EURORDIS-Rare Diseases Europe, NORD is mobilizing communities nationwide on February 28 to \u201cShow Your Stripes.\u201d\u00a0 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.<\/span>\u00a0<\/span><\/p>\n

NORD Congressional Briefing<\/span><\/b><\/p>\n

To jump-start activities leading into Rare Disease Day,\u00a0NORD will host a congressional briefing,\u00a0<\/span>\u201cPatient Advocacy Driving Innovation for People Living with Rare Diseases,\u201d<\/span><\/i>\u00a0from\u00a010\u201311:30 a.m. on Feb. 24 at the Capitol Visitor Center (SVC 203) in Washington, D.C.\u00a0The 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,\u00a0will deliver remarks.<\/span>\u00a0<\/span><\/p>\n

How to Show Your Stripes<\/span><\/b><\/p>\n

The zebra\u00a0is the official mascot\u00a0of the\u00a0rare disease\u00a0community, inspired by the medical\u00a0school proverb: \u201cWhen you hear hoofbeats, think horses, not zebras.\u201d Rare disease patients are the \u201czebras\u201d whose conditions are often overlooked or misunderstood.<\/span>\u00a0<\/span><\/p>\n

This year, NORD invites individuals, families,\u00a0physicians,\u00a0schools, employers,\u00a0communities\u00a0and\u00a0businesses\u00a0to\u00a0participate\u00a0in its \u201cShow Your Stripes\u201d national awareness\u00a0campaign\u00a0through a range of\u00a0advocacy initiatives.\u00a0Activities taking place\u00a0include:\u00a0patient advocacy events at state capitols and\u00a0at\u00a0<\/span>NORD\u00ae<\/sup> Rare Disease Centers of Excellence<\/strong><\/span><\/a>\u00a0hospitals\u00a0and research institutes\u00a0nationwide,\u00a0community celebrations, landmark lightings, and social media activations. Individuals and companies are encouraged to wear zebra stripes\u00a0and, \u201cShow Your Stripes\u201d for the 1 in 10 Americans living with a rare disease, and\u00a0to\u00a0participate\u00a0in at least one of the following activities:<\/span>\u00a0<\/span><\/p>\n