From our friends at the National Institutes of Health (NIH) and National Center for Advancing Translational Science (NCATS):
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. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations underway to address scientific challenges and to advance new treatments.
Featured Speaker: KIF1A.ORG Co-Founder Luke Rosen
Luke will be participating in a panel session focused on health literacy and how to elevate the rare diseases community and enhance research scheduled for 2:10 p.m. Eastern Time.
The goals of Rare Disease Day at NIH are to:
- Demonstrate the NIH commitment to helping people with rare diseases through research.
- Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
- Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policymakers.
- Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
- Put a face on rare diseases by sharing stories of patients, their families and their communities.
Rare Disease Day at NIH will be held virtually on Monday, March 1, 2021, from 10:30 a.m. to 5:30 p.m. EST. This year’s event will feature interactive panel discussions, rare stories through TED-style talks and more.
The event is free and open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives and government employees.