FOR IMMEDIATE RELEASE
Contact: Maureen Neville, Communications Director
National Rare Skin Disease Conference comes to Indianapolis, June 20-22, 2014! #FIRSTNFC
COLMAR, PA (March 27, 2014) 2014 National Family Conference for FIRST, Foundation for Ichthyosis & Related Skin Types, Inc.® to take place in Indianapolis, Indiana, June 20-22. Participants will include patients and families affected with ichthyosis, and world-class dermatologists conducting research in the fields of genetics, enzyme replacement, and translational science with regard to rare diseases of the skin. Conference sponsors include Galderma, Novartis, NeoStrata, GeneDx, Summers Labs, the Lennox Foundation, and more.
“There is no known cure for ichthyosis, only treatments,” said Jean Pickford, Executive Director of FIRST. “In addition to the many educational and networking opportunities for affected families, our conference offers a clinical setting in which doctors can interact with patients one-on-one and gain important clinical insights needed for better treatments and possible cures.” To kick off the three-day conference, there will be a unique “grand rounds” opportunity for doctors to observe patients with ichthyosis on Wednesday, June, 18, from 9:00 am-12:00 pm at Indiana University’s Department of Dermatology.
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. This disorder affects people of all ages, races, and gender. The disorder usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
About the Foundation for Ichthyosis & Related Skin Types, Inc.®
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 $1.5 million in research funding for better treatments and eventual cures. For more information, call toll-free at 1.800.545.3286 or visit www.firstskinfoundation.org.
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