Washington, D.C. — June 9, 2026 — The National Organization for Rare Disorders (NORD®), representing the 30 million Americans living with rare diseases, today announced the appointment of Kathryn Lowell…
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Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases. The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS…
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Washington, D.C. — (June 3, 2026) Yesterday 48 non-profit, non-partisan patient organizations issued a statement in response to the interim final rule implementing the new Medicaid work reporting requirement provisions…
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Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving …
Continue reading “From Pain To Purpose: Kari Luther Rosbeck”
Read moreChris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he’d get. After a …
Continue reading “Chris Anselmo: The Accidental Muscular Dystrophy Advocate”
Read moreNORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community Cleveland, OH, March …
Read moreFrom the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I …
Continue reading “Scleroderma and Horses: Whitney’s Rare Disease Day Story”
Read moreI am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years. There are so many ways my condition has affected my life in both bad and surprisingly …
Continue reading “Rare Disease Day 2022: Grace’s Story”
Read moreI am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU). My biggest mission since my son was born was …
Continue reading “#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day”
Read moreI was born with a rare genetic condition known as Congenital Insensitivity to Pain (CIP), which leaves an individual unable to sense physical pain. This “disease” or condition, as I …
Continue reading “Removing the Obstacles: Steven’s Rare Disease Day Story”
Read moreNORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community February …
Continue reading “The Most Important Holiday Most Don’t Know: Celebrating Rare Disease Day”
Read moreWelcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of Rare Disease Day, we are proud to welcome actor and social media …
Continue reading “Rare Disease Day 2022 with actor Adam Rose”
Read moreSend a message to your representatives NOW telling them to support access to vital telehealth services. Recognizing how important access to telehealth services has been to millions of Americans during …
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