Rare Disease Day Celebrated at Einstein
On a truly rare day — February 29, 2016 — the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (IDDRC) hosted its fourth annual Rare Disease Day celebration. Dr. Sophie Molholm, associate director of the IDDRC, introduced the program to a packed LeFrak Auditorium.
Speakers and presenters at Rare Disease Day included (from left): Joanna Rudnick, Rick Guidotti, Alena Galan, Dr. Bob Marion, Dr. Sophie Molholm and Dr. Howard Steinman.Observed worldwide for the past nine years, Rare Disease Day aims to raise awareness of more than 6,500 rare diseases, disorders and syndromes and the ways in which they affect patients’ lives. In the United States, a disease is considered rare if it occurs in fewer than 200,000 Americans at any given time.
Dr. Steven Walkley, director of the IDDRC, discussed his own personal involvement with research of rare diseases in Einstein’s The Doctor’s Tablet blog.The highlight of this year’s event at Einstein was the screening of “On Beauty,” a film by Emmy-nominated documentary filmmaker Joanna Rudnick in which she followed photographer Rick Guidotti as he snapped striking images of people living with genetic disorders in countries around the world for his “Positive Exposure” project.
Through Positive Exposure, a not-for-profit organization established by Mr. Guidotti to address myths and misperceptions about individuals born with genetic abnormalities, the former award-winning fashion photographer seeks to challenge the accepted definition of beauty. In doing so, he aims to help those living with these serious disorders change how they see and feel about themselves as well as help change the way others perceive them.
After the film screening, Mr. Guidotti and Ms. Rudnick entertained questions from students, faculty and guests, sharing stories about the lives and experiences of many of the young people featured in Mr. Guidotti’s photographs. Attendees also heard 18-year-old Alena Galan sing “The Climb.” Ms. Galan, who was born with Mucopolysaccharidosis type VI, has performed at each of the IDDRC’s Rare Disease Day celebrations.
The event concluded with a reception along Einstein’s “Main Street,” in the Leo Forchheimer Medical Science Building, where members of the Einstein community interacted with the speakers while enjoying an exhibit of Mr. Guidotti’s photographs.
Photo Gallery
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Posted on: Wednesday, March 02, 2016