Founded in 1981Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
Ichthyosis Focus Newsletter
FIRST publishes a quarterly newsletter for our members with articles about our families and the latest news and research on ichthyosis.
FIRST has produced a variety of booklets to provide more in-depth information at your fingertips.
Ichthyosis: An Overview
Ictiosis: Una Revision
This booklet provides a general introduction to ichthyosis.
This booklet provides an in-depth look at how ichthyosis is passed from parent to child.
Release the Butterfly: A Handbook for Parents & Caregivers of Children with Ichthyosis
Provides valuable information to parents and caregivers about caring for a person affected with ichthyosis.
A Guide for Teachers and School Personnel
Provides an overview to introduce teachers and other school personnel to the needs of an affected student.
In addition to the above publications, FIRST has created a wide variety of resource materials for reference in learning more about ichthyosis, its care and management.
Ichthyosis Disease Type Fact Sheets
These sheets provide an overview of each type of ichthyosis.
Ichthyosis Resource Sheets
Resource sheets provide general information about specific areas of concern managing ichthyosis
New Parent Information
Informational sheets specific to caring for newborns affected with ichthyosis.
An informational card that can be handed out to the curious, when questions are asked.