Overview

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center, Rare Disease Day at NIH will be held both in-person at the NIH main campus (Natcher Conference Center) and virtually on Tuesday, Feb. 28, 2023, from 9 a.m. to 5 p.m. EST. The event aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. The goals 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 the rare diseases community. 
• Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts. 
• Shine a spotlight on stories told by patients living with a rare disease, their families, and their communities. 

Rare Disease Day at NIH seeks to bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives, and government staff. The event is free and open to the public.

This year’s event will feature panel discussions, rare diseases stories, in-person and virtual exhibits and scientific posters, and a virtual art exhibition. An event app will be available with engagement features and ways to connect with others.

Attendees are asked to register prior to attending in-person or viewing the livestream, and registration is required to use the event app. Attendees are also expected to exercise professionalism, consideration, and respect in your speech, postings, and other actions.

Learn more about the public health challenge of rare diseases — guest authored by NCATS director, Dr. Joni Rutter.

Attending In-Person?

Check-in/registration will open at 8:00 a.m. EST, followed by welcoming remarks at 9:00 a.m. and adjournment scheduled by 5:00 p.m. Before arriving at NIH, please review our tips for accessing the NIH main campus and other visitor information. Be sure to allow at least 45 minutes for passing through NIH security. The location on NIH main campus is Natcher Conference Center (Building 45), 9000 Rockville Pike, Bethesda, MD 20892.

Food and beverage options in the Natcher Conference Center are limited to vending machines only. Other options on campus include:

• Shuttle or walk to food service facilities in Buildings 10, 31, or 35.
• Same-day mobile orders by Eatify for pick up in Buildings 10, 31, or 35.

If you do not want your photo taken during the event, please notify staff at the registration desk. 

Exhibits & Scientific Posters

Because Rare Disease Day at NIH is planned to be held in-person and virtually, exhibitors and poster-presenters may request physical space in Natcher Conference Center and/or a virtual profile in the event app. To sign up for an exhibit or poster, please download an exhibit request form and/or poster request form, and submit the completed form(s) to Ashley Cornett. You must register for Rare Disease Day at NIH before submitting. Exhibit and poster capacity in Natcher Conference Center is limited, so requests for in-person space will be assigned on a first-come, first-served basis.

If you previously applied and now are unable to participate, please let Ashley know.

COVID-19

Proof of COVID-19 vaccination is not required to attend Rare Disease Day at NIH; however, all participants, speakers, and staff are encouraged to complete their COVID-19 vaccination series and boosters (if eligible) before attending.

In the days leading up to the event, attendees should self-monitor for symptoms of illness. If you are experiencing any COVID-19 symptoms; test positive for COVID-19; or believe you have been exposed to a confirmed or suspected case of COVID-19, do not attend the event in person. 

Precautions according to the information below should be followed depending on community COVID-19 levels. The most up-to-date community level may be found by selecting “Maryland” and “Montgomery County” on the CDC COVID-19 by County page.

If you do not have a mask, they will be available at registration/check-in. Hand sanitizer will also be provided.

Event App

The Rare Disease Day at NIH event app will allow participants to network and engage with other attendees, speakers, exhibitors, and poster authors. Available for both computers and mobile devices, attendees may use the app to:

• Submit questions and chat.
• Participate in exhibitor and poster presentation hours.
• Directly message or virtually meet with others.
• Personalize schedules and access the event's livestream.
• Tour the Beyond the Diagnosis art exhibition.

Partners in Planning

Planning committee members include representatives from:

• National Center for Advancing Translational Sciences (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)
• United BioSource LLC (UBC)