• IAM 2016
  • Conference 2016
  • 35th Anniversary
  • What is Ichthyosis
  • Tele-Ichthyosis

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

Upcoming Events & Latest News
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
5/22 - FIRST to Know Conference Call, Occupational & Physical Therapy
The FIRST to Know calls are a great way to “meet” other families, individuals, and medical experts. Each call is centered on a topic or subject, and lasts for one hour. Read More
5/22 - FIRST to Know Conference Call, Occupational & Physical Therapy
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