• RAISE 2016
  • Tele-Ichthyosis
  • What is Ichthyosis
  • 35th Anniversary

Our mission is to improve lives and seek cures for those affected by ichthyosis and related skin types.

Upcoming Events & Latest News
FIRST CEO, Jean Pickford attends NIAMS Ichthyosis Round Table
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) held a roundtable discussion last week in Bethesda, MD, focused exclusively on ichthyosis. Read More
FIRST CEO, Jean Pickford attends NIAMS Ichthyosis Round Table
FIRST Publishes 2015 Annual Report
2015 Annual Report & Financial Statement Now Available Read More
FIRST Publishes 2015 Annual Report
District Donuts & Step2 Team up to Raise Awareness
District Donut Shop in Washington DC & Step2 are holding a fundraising, till May 31, 2016. #ichthyosisawarenessmonth Read More
District Donuts & Step2 Team up to Raise Awareness
Jane & Henry Bukaty Skin Care Fund Applications are now being accepted
May 1, 2016 - FIRST members can apply for funding for skin care supplies, treatments, and/or cooling devices. Read More
Jane & Henry Bukaty Skin Care Fund Applications are now being accepted
Rare Disease Family Camp Offered!
April 13, 2016 - The Hole in the Wall Gang Camp is partnering with NORD to offer the first-ever Rare Disease Family Camp. Read More
Rare Disease Family Camp Offered!
Darier-White / Hailey-Hailey Disease Patient Recruitment
March 22, 2016 - Have you been diagnosed with Darier-White or Hailey-Hailey Disease? If so, you may be eligible to participate in a clinical research study! Read More
Darier-White / Hailey-Hailey Disease  Patient Recruitment