Bullet Points for Media
Ichthyosis (pronounced ick-thee-oh-sis) is a family of rare, genetic skin diseases characterized by dry, cracked, scaling skin that may be thickened or very thin
At least 300 babies are born each year with a moderate to severe form of ichthyosis.
There is currently no cure for ichthyosis. Dedicated researchers continue to develop effective ways to manage the disorder.
The thickness of the skin and scale of those affected does not allow their sweat to reach the surface of their skin and cool them effectively. In warm weather, those affected are at risk for overheating, heat exhaustion, and heat stroke.
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis.
FIRST provides information on its website www.firstskinfoundation.org, printed publications, and a quarterly newsletter, Ichthyosis Focus. FIRST hosts a biennial national family conference, and patient support forums which provide families the opportunity to create connections with each other and consult with leading medical experts.
FIRST’s Research Grant Program has funded 13 worthy projects totaling more than $1.4 million since 2006.
download of pdf of this information
For additional information email Maureen Neville, FIRST Communications Director
October 14, 2014 - Monsters Running for Lucky 13!
September 22, 2014 - Johnsonburg High School Hosts Benefit Concert for Extremely Rare Skin Disorder
September 1, 2014 - Community Joins Together to Support Rare Skin Disorder
May 12, 2014 - Noblesville, Indiana 2-Year-Old Living with Extremely Rare Skin Disease
March 27, 2014 - National Rare Skin Disease Conference comes to Indianapolis
March 18, 2014 - Famed Photog. to Keynote Rare Disease Conference
February 20, 2014 - Creating Awareness at the Gwinnet Gladiators
November 20, 2013 - National Nonprofit to Partner with Boston Celtics
October 29, 2013 - Grassroots Fundraising Record Shattered!
October 24, 2013 - Running for Rare Disease in Hagerstown, Maryland
October 8, 2013 - Monsters Running in Friendswood, Texas
May 25, 2013 - Woman with Harlequin Ichthyosis Delivers a Healthy Baby Boy!
April 15, 2013 - May is Ichthyosis Awareness Month
March 20, 2013 - Tommy Gears Up for Baseball Season
February 26, 2013 - FIRST Partners with Major League Baseball Teams
February 13, 2013 - Global Day to Recognize Rare Diseases - Wynnewood Woman Raises Awareness About Ichthyosis and Other Rare Diseases
January 4, 2013 - Tommy, the 'NFL’s Biggest Little Fan,' Visits NFL Teams to Help Raise Awareness About Ichthyosis
December 18, 2012 - FIRST Receives $35,000 Donation from Brentwood Productions
December 7, 2012 - The Foundation for Ichthyosis & Related Skin Types Offers Tips for Skin Care During Winter Months
December 3, 2012 - The Foundation for Ichthyosis & Related Skin Types Awards $75,000 Grant to Dr. Amy Paller
November 29, 2012 - New Study Estimates Incidence of Rare Genetic Skin Disorder Between 200-400 Each Year
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