OPPORTUNITIES TO PARTICIPATE IN RARE DISEASE DAY

Rare Disease Day is February 28th (February 29th in leap years), and this year there are two opportunities for patients to participate in meaningful activities. Registration links for these events are posted under the Events Calendar on the BEBRF Website.

The day before on February 27th, the Food and Drug Administration (FDA) of the US government will be holding a Virtual Event entitled “Intersections with Rare Diseases – A Patient-focused Event,” which will explore a range of topics related to rare diseases. Participants will have the opportunity to:

• Hear directly from the FDA on initiatives to advance medical product development for rare diseases.

• Engage with the FDA to provide your perspective as a patient, caregiver, or family member.

• Understand considerations and challenges associated with clinical trials in small populations.

• Hear from medical students on rare disease education for medical professionals.

On February 28th, the National Institutes of Health (NIH)’s National Center for Advancing Translational Sciences (NCATS) will co-sponsor this year’s Rare Disease Day event at the NIH Clinical Center.

This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations that address scientific challenges and advance research for new treatments. This is a free event that is open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives, and government staff. This year’s event will be both virtual and in person at the Natcher Conference Center in Bethesda, MD. A livestream will be available via NIH VideoCast with the event archived for replay afterward.