Rare Disease Day

Rare Disease Day: Exhibit and Research Conference

Twenty-five colorful portraits of infants, toddlers, children, and teens with rare diseases are on display along Main Street in the Forchheimer Building through March 15, 2019. Timed to coincide with International Rare Disease Day on February 28, the Beyond the Diagnosis exhibit provides a powerful glimpse of the faces and spirits of those who live with rare diseases and hope for advances in treatments. The exhibit was made available by Beyond the Diagnosis, a nonprofit organization that raises awareness of the 7,000-plus mostly incurable rare or “orphan” diseases that each affect less than 200,000 people.

Today, Einstein’s annual Rare Disease Day research conference will be held in the LeFrak Auditorium in the Price Center. The 3-hour symposium, “Rare Disease Meets Personalized Medicine,” is sponsored by Einstein’s Rose F. Kennedy Intellectual and Developmental Disabilities Research Center. Starting at 3 p.m., the conference will feature discussions with families of children with rare diseases, Einstein researchers, and students. The event concludes with refreshments, live jazz, and the exhibit viewing on Main Street from 5:30 to 6:00 p.m.

Photo Gallery

(To view slideshow of photo gallery, click on an image below; then move your mouse over the left or right margins to navigate.)

Aidan, Ectodermal Dysplasia Allison, Propionic Acidemia Ava W., Fabry Disease Brian, A-T Case, Hunter Syndrome Devon, aHUS Everly, Megacystic Microcolon Intestinal Hypoperistalsis Guiliana, Apert Syndrome Haley, Landau Syndrome Jayson, MN1 Gene Mutation Joey, F.I.R.E.S. Syndrome Khai, Cavernous Malformation Kylie, Pompe Disease Luka, Primary Immunodeficiency Malia & Callie,	Undiagnosed Max, Krabbe Disease Meghan, Hutchinson-Gilford Progeria Syndrome Olive, Alfi's/9p- Syndrome Purnell, Niemann-Pick Sam, Vanishing White Matter Savanna, 7Q36.1Q36.3 Deletion Siena, Prader-Willi Syndrome Theodora, Timothy Syndrome Truman, Williams Syndrome Victor, CLOVES Syndrome

Posted on: Wednesday, February 27, 2019