Rare Disease Day at National Institutes of Health

Patients, advocates and researchers to meet at the U.S. center for medical research.

The annual Rare Disease Day event at the National Institutes of Health in Bethesda, Maryland brings together patients, researchers and physicians. This group above participated in a 2018 panel discussion about how young people approach advocacy work.
The annual Rare Disease Day event at the National Institutes of Health in Bethesda, Maryland brings together patients, researchers and physicians. The group above participated in a 2018 panel discussion about how young people approach advocacy work.

If you’re in reach of Bethesda, Maryland, the U.S. National Institutes of Health could be the perfect place to spend Rare Disease Day, which is February 28.

The NIH offers a free, day-long program designed to give voice to those who have rare diseases and create a space for researchers, physicians, advocates and patients to meet and share ideas. Sponsored by the National Center for Advancing Translational Sciences, this year’s program includes panel discussions about research models, patient registries and rare cancer initiatives. The closing session, “No Disease Left Behind, No Patient Left Behind,” will explore the complexities of clinical trials for gene editing and gene therapy.

Learn more about the event, including how to register, at the NIH website. The deadline to sign up is February 14.

“Although each rare disease affects fewer than 200,000 Americans, in total, these illnesses affect an estimated 30 million people in the United States,” according to the NIH.