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Our mission is to educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.

Upcoming Events & Latest News
Participants needed for “Itch” Study at Temple University
December 10, 2014 - The purpose of this research study is to examine the genetic differences involved with itch in atopic eczema, psoriasis, and ichthyosis patients. Read More
Participants needed for “Itch” Study at Temple University
The Latest Update from the Gene Discovery Program at Yale…
December 8, 20014 - Thanks to advances in next-gen sequencing, a number of studies in recent years are beginning to unravel the role of de novo mutations in human disease. Read More
The Latest Update from the Gene Discovery Program at Yale…
FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK
December 16, 2014 - The research specifically focuses on understanding the mechanisms that cause scaling, and subsequently increasing the options for treatment. Read More
FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK
Rare Disease Day 2015!
December 11, 2014 - Rare Disease Day is observed on the last day of February to raise awareness for rare diseases and improve access to treatments for individuals with rare diseases and their families Read More
Rare Disease Day 2015!
Monster Dash in Friendswood, an Outrageous Success!
December 4, 2014 - For the 13th year, Dawn Johnson and her family hosted a Monster Dash/Fun Run 5K to raise money for FIRST. Read More
Monster Dash in Friendswood, an Outrageous Success!
2016 National Family Conference Location Announced!
It’s not early to start planning for the 2016 National Family Conference-San Diego! We’ve already selected a city and location. Read More
2016 National Family Conference Location Announced!
Doctors Connect Online to Diagnose and Advise
November 2014 - Telehealth is the delivery of health care using technology to link patients and care providers in separate locations. It's a promising way to deliver care where access is a problem. Read More
Doctors Connect Online to Diagnose and Advise