Rare Disease Day Set for Feb. 28

Rare Disease Day at NIH will be held virtually on Monday, Feb. 28 from 10 a.m. to 6 p.m. ET.

This year’s event will feature panel discussions, rare diseases stories, virtual exhibitors and scientific posters. It seeks to bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives and government staff. It is free and open to the public.

Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. NCATS and the Clinical Center sponsor Rare Disease Day at NIH as part of this global observance.

Each year, the slogan for NIH’s event has been “Patients & Researchers—Partners for Life.” This slogan aligns with NCATS’s philosophy that researchers must work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research.

Since rare diseases often are difficult to diagnose, it can take years to obtain an accurate diagnosis. Even after a proper diagnosis, treatment often is unavailable, because fewer than 5 percent of rare diseases have a treatment approved by the FDA.

Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.

Learn more about the event, view the agenda and register at https://ncats.nih.gov/news/events/rdd.