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 16 worthy projects totaling nearly $1.7 million since 2006.

Download of pdf of this information

For additional information email the FIRST office.

Press Releases

January 2, 2016 - FIRST Celebrates 35 Years!

May 2, 2015 - Release the Butterfly Concert is Going on Tour

April 23, 2015 - May is Ichthyosis Awareness Month.  Use Your Voice.

February 13, 2015 - FIRST & Award-Winning Photographer Produce FRAME Film February 28, World Rare Disease Day

February 12, 2015 - Be FIRST on the Dance Floor!

January 12, 2015 - Running for Rare at the Houston Marathon

November 3, 2014 - A Beach Bonfire and an Evening of Yoga

October 31, 2014 - UFIRST Scholarship Awarded in Grafton

October 31, 2014 - UFIRST Scholarship Awarded in Attleboro

October 31, 2014 - UFIRST Scholarship Awarded in Penryn

October 31, 2014 - UFIRST Scholarship Awarded in Jackson

October 31, 2014 - UFIRST Scholarship Awarded in Hilliard

October 31, 2014 - UFIRST Scholarship Awarded in South Abington Township

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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