• Family Conference 2014
  • Research
  • What is Ichthyosis
  • Meet our Families
  • Grassroots

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
Indianapolis Family Conference Details are Posted!
October 30, 2013 - We think the best way to explain why you should attend is to hear first-hand what others have said. Read More
Indianapolis Family Conference Details are Posted!
Galderma Publishes a Study of Lamellar Ichthyosis
December 9, 2013 - FIRST is excited to share that the enthusiasm of our participant members was overwhelming and the outcome produced a unique overview of life for individuals with lamellar ichthyosis Read More
Galderma Publishes a Study of Lamellar Ichthyosis
Ear Related Symptoms Survey Results Published
March 23, 2014 - During 2012-2013, the doctors at Boston Children’s Hospital, conducted a pilot survey study to obtain information about ichthyosis and its ear-related symptoms. Read More
Ear Related Symptoms Survey Results Published
Tapping Local Media for Grassroots Events
March 23, 2014 - any members of the FIRST community are enthusiastically raising awareness by planning unique and exciting events throughout the entire month. Read More
Tapping Local Media for Grassroots Events
2014 RARE Disease Day Activities
March 13, 2014 - FIRST and our members worked hard creating awareness for rare disease. Read More
2014 RARE Disease Day Activities
The National Health Council’s 27th Annual Voluntary Health Leadership Conference
March 13, 2014 - The 27th Annual Voluntary Health Leadership Conference brought together nearly 80 senior staff and volunteer leaders from 32 of the NHC’s member patient advocacy organizations. Read More
The National Health Council’s  27th Annual Voluntary Health Leadership Conference