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Rare Disease Day 2026 Scientific Symposium
In observance of Rare Disease Day, Seattle Children’s Research Institute will host a scientific symposium focused on advancing research and clinical care for rare conditions.
The program will feature faculty from Seattle Children’s and the University of Washington and highlight current work in diagnostics, pathophysiology, and therapeutic development. The goal is to support multidisciplinary collaboration across Seattle’s rare disease research and clinical community.
Date: Friday, February 27, 2026
Time: 9:00 a.m. to 4:00 p.m.
Location: Building Cure, McKinstry Auditorium
Food: Lunch and coffee will be provided
Find out more via the Rare Disease Day flyer (PDF)
View the event on the IHDD calendar.
RSVP to participate in this event.
Rare Disease Day 2026 Scientific Symposium
In observance of Rare Disease Day, Seattle Children’s Research Institute will host a scientific symposium focused on advancing research and clinical care for rare conditions.
The program will feature faculty from Seattle Children’s and the University of Washington and highlight current work in diagnostics, pathophysiology, and therapeutic development. The goal is to support multidisciplinary collaboration across Seattle’s rare disease research and clinical community.
Date: Friday, February 27, 2026
Time: 9:00 a.m. to 4:00 p.m.
Location: Building Cure, McKinstry Auditorium
Food: Lunch and coffee will be provided
Find out more via the Rare Disease Day flyer (PDF)
View the event on the IHDD calendar.
RSVP to participate in this event.
Event Details
Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Thursday, Feb. 29, 2024, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition. The event is free and open to the public.
Partners in Planning
Planning committee members include representatives from the following organizations:
- NCATS
- NIH Clinical Center
- National Cancer Institute (NCI)
- National Heart, Lung, and Blood Institute (NHLBI)
- National Institute on Alcohol Abuse and Alcoholism (NIAAA)
- National Institute of Neurological Disorders and Stroke (NINDS)
- Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups (RDCRN-CPAG)
- U.S. Food and Drug Administration (FDA)
- The Children’s Inn at NIH
- EveryLife Foundation for Rare Diseases
- National Organization for Rare Disorders (NORD)
- Undiagnosed Diseases Network Participant Engagement and Empowerment Resource (UDN PEER)
NCATS and Rare Diseases Research
Progress in data science and an increased understanding of disease genetics lead experts to agree that more than an estimated 10,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children. In all, nearly 10% of the U.S. population have a rare disease. Rare diseases often are difficult to diagnose — it can take years. Even after an accurate diagnosis, treatment often is not available because fewer than 500 rare diseases have FDA-approved treatments. Research led by NCATS suggests that nationwide medical costs for individuals with rare diseases are likely as high as those faced by people with common diseases, such as cancer and heart failure.
NCATS is committed to using research to address the public health crisis presented by rare diseases. NCATS’ Division of Rare Diseases Research Innovation (DRDRI) facilitates and coordinates NIH-wide research activities, which have the potential to speed development of treatments for multiple rare diseases and ultimately help more patients more quickly. Learn more about DRDRI and NCATS’ rare diseases research programs and the center’s impact on rare diseases.
