Rare Skin Disease Foundation & Award-Winning Photographer
Produce FRAME Film - February 28, World Rare Disease Day
FOR IMMEDIATE RELEASE
Contact: Maureen Neville, Communications Director
Colmar, PA - Feb. 13, 2015
- On Feb. 28, 2015, World Rare Disease Day, the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) will be the center focus of the FRAME (Faces Redefining the Art of Medical Education) film project, created by photographer Rick Guidotti, founder of Positive Exposure.
The FRAME film series was developed as a visually engaging tool to educate
Rick Guidotti, Founder Positive Exposure
medical students, and the medical community at large, about the "human experience" of the rare disease community. "This film will be multi-purpose for FIRST, as it will serve as a unique and artistic presentation of ichthyosis, used for awareness raising, fundraising and education," says FIRST Communications Director, Maureen Neville. 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 $1.4 million in research funding for better treatments and eventual cures. For more information, call toll-free at 1.800.545.3286 or visitwww.firstskinfoundation.org.