• Research
  • RAISE
  • Tele-Ichthyosis
  • Meet our Families
  • What is Ichthyosis

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
FIRST & Award-Winning Photographer Produce FRAME Film on World Rare Disease Day
February 16, 2015 - FIRST will be the center focus of the FRAME (Faces Redefining the Art of Medical Education) film project, created by photographer Rick Guidotti, founder of Positive Exposure. Read More
FIRST & Award-Winning Photographer Produce FRAME Film on World Rare Disease Day
Boston Children's Hospital Conducting a Harlequin Ichthyosis Study
February 9, 2015 - Boston Children's Hospital is conducting a medical records study of people with harlequin ichthyosis. Read More
Boston Children's Hospital Conducting a Harlequin Ichthyosis Study
Patient Support Forums are Taking Place Throughout the Country!
February 3, 2015 - Come out for a day of networking with other families affected by ichthyosis. Meet other families in your area and learn how to build a stronger network in the ichthyosis community. Read More
Patient Support Forums are Taking Place Throughout the Country!
UFIRST Scholars Program 2015 Applications Now Available!
February 1, 2015 - An opportunity for students affected with a form of ichthyosis or a related skin type to achieve their highest educational potential. Applications are now available. Read More
UFIRST Scholars Program 2015 Applications Now Available!
Diya & Aliya's Friends Skin Care Fund is now accepting applications!
February 1, 2015 - The fight against ichthyosis is not only medical but also financial. Daily treatment routines can be complicated by the ongoing costs of medical supplies and other aids. Read More
Diya & Aliya's Friends Skin Care Fund is now accepting applications!