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.
Tele-Ichthyosis Online Website
Through FIRST's Tele-Ichthyosis program, dermatologists can consult with world-class experts regarding diagnosis, treatment options, or any other unanswered questions or concerns regarding individual case of patients with ichthyosis and related skin types. Doctors can upload questions, documents, and images to the secure, HIPAA-compliant environment which facilitates communication between dermatologists dealing with this rare set of diseases. No matter where they are located, consulting dermatologists can consult with FIRST's expert panel in a timely and efficient manner.
Interested dermatologists should click on the link above to register and begin uploading their case.
FIRST is grateful to the Lennox Foundation for funding the Tele-Ichthyosis project in memory of Dane Christian Phelps.
Quick reference presentations by expert members of our Medical & Scientific Advisory Board. Topics include; Genetics, EHK, and Eyes and Ears.
FIRST has sponsored two online educational modules to aid in the diagnosis of a patient with ichthyosis, or the care of an affected neonate. Currently, two modules are available:
Types of Ichthyosis & Making the Correct Diagnosis by Mary L. Williams, MD, Professor of Dermatology at the University of California in San Francisco, CA (10 minutes)
Management of Ichthyosis in the Neonate by Bari B. Cunningham, MD, Director, Dermatologic Surgery and Pediatric & Adolescent Dermatology at Children's Hospital & Health Center in San Diego, CA (12 minutes)
Medical Professionals interested in ichthyosis research may be interested in information about FIRST's Research Grant Program (including grant application information) and FIRST's links to recent ichthyosis research and published articles.
National Ichthyosis Registry
Between 1994 and 2005, with the assistance of FIRST and the NIH, over 500 individuals with ichthyosis were enrolled in the National Ichthyosis Registry. Information in the Registry is available to researchers to advance understanding of the diagnosis, causes, and treatment of the disorders.
Physician Referral Service
FIRST maintains a service which provides referrals to dermatologists for patients with ichthyosis. Physicians interested in participating in this program should contact FIRST.