FOR IMMEDIATE RELEASE
GLOBAL DAY TO RECOGNIZE RARE DISEASES
Wynnewood Woman Raises Awareness About Ichthyosis and Other Rare Diseases
COLMAR, PA (February 13, 2013) – Global Rare Disease Day, coordinated by the National Alliances of Rare Disease Patient Organizations in the United States and the European Organization for Rare Diseases (Eurordis) internationally, was first launched on February 29, 2008, a rare day. It is celebrated annually on February 28, with the main objective to raise awareness throughout the general public and policy-makers about rare diseases and their impact on patients’ lives.
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is an active participant in this annual event. As a Rare Disease Day partner, FIRST joins hundreds of other patient organizations, government agencies, and medical societies in focusing attention on rare diseases. Members of FIRST organize activities to draw attention to ichthyosis and all rare diseases.
This year, FIRST member Laurie Ann Fiore, of Wynnewood, Pennsylvania has planned a “Wear That You Care” campaign at her children’s elementary school, Penn Wynne Elementary. Students and staff will wear jeans or blue to show their support of Rare Disease Day. Mrs. Fiore is also making awareness ribbons for participants to wear for the day. The Fiore children, Joseph and Faith, are both affected with congenital ichthyosiform erythroderma (CIE), an autosomal recessive form of ichthyosis that affects approximately 1 in every 100,000 babies born. In this digital age, word of Laurie’s efforts spread and she has people participating from 12 states across the country! She is also asking participants to support FIRST with a donation.
“There is no known cure for ichthyosis, only treatments,” said Jean Pickford, Executive Director of FIRST. “We can’t thank Laurie and her family enough for her efforts and support.”
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 disease affects people of all ages, races and gender. The disease 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 $1.4 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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