Rare Skin Disease Foundation & Award-Winning Photographer Produce Ichthyosis Video on World Rare Disease Day
February 27, 2015
FRAME, a series of video vignettes portraying individuals with a variety of genetic conditions, was created as an educational tool for the health care community. “FRAME allows us to teach health care providers about the different tenets of a disease from the perspective of an individual actually living with a certain condition,” says Guidotti.
“This vignette will be multi-purpose for FIRST, as it will serve as a unique and artistic presentation of ichthyosis, used for awareness raising as well as education,” says FIRST Executive Director, Jean Pickford. Five affected families will be featured in the film, scheduled to be produced in New York City.
According to FIRST, each year more than 16,000 babies are born with some form of ichthyosis, of those, approximately 300 are born with a moderate to severe form of ichthyosis. The disorder can be life threatening and affects people of all ages, races and gender. Ichthyosis usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
About Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)
The Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) is the only nonprofit foundation in the United States dedicated to families affected by the rare skin disorder ichthyosis. Approximately 300 babies each year are born with a moderate to severe form of ichthyosis. FIRST educates, inspires, and connects those touched by ichthyosis and related disorders through emotional support, information, advocacy, and has supported more than $1.6 million in research funding for better treatments and eventual cures. For more information, call toll-free at 1.800.545.3286 or visit https://www.firstskinfoundation.org
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