Rare Skin Disease Foundation & Award-Winning Photographer Produce Ichthyosis Video on World Rare Disease Day

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On February 28, 2015, World Rare Disease Day, the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) will be the center focus of the FRAME video series (Faces Redefining the Art of Medical Education), created by Positive Exposure. Positive Exposure, founded by award-winning photographer, Rick Guidotti, is an innovative arts, education and advocacy organization, working with individuals living with genetic, physical, cognitive and behavioral difference.

Rick Guidotti of Positive Exposure photographs attendees at 2014 National Family Foundation for Ichthyosis and Relates Skin Types

Rick Guidotti & Attendees at 2014 FIRST National Family Conference-Indianapolis

The video vignette will be a unique combination of art and education, raising awareness for ichthyosis in a very compelling way.

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 http://www.firstskinfoundation.org

Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)
Maureen Neville, Communications Director
215.997.9400
mneville(at)firstskinfoundation(dot)org

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Maureen Neville
@FIRST_Skin
since: 03/2010
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Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)

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