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.
930 E. Woodfield Road
Schaumburg, IL 60173
Toll Free: 866.503.SKIN (7546)
AAD Washington, DC Office
1445 New York, Ave., NW. Suite 800
Washington, D.C. 20005-2134
Fax: (202) 842-4355
The Coalition of Skin Diseases
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
International collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images
Through the Coalition of Skin Diseases, we have learned of a book that might be helpful to children. The book is Different Just Like Me and it was written by Lori Mitchell, whose daughter has vitiligo.
There is no mention of vitiligo in the book, only meeting people who are different than the main character, April. The story is told from the point of view of a little girl anticipating a visit to her grandmother’s house. Each day that she is waiting for the trip, the little girl encounters someone who is different, someone who is either older, speaks another language, has a disability, or is of a different race, But, in each situation, that person is doing the same thing that April is. The book is available on Amazon and most likely also at your local library.
Disability Resource Database - Iowa Compass
Center for Disabilities & Development
100 Hawkins Dr. #S295
Iowa City, IA 52242-1011
Diya & Aliya's Friends (DAF) Skin Care Fund
Thanks to the generosity of the Shahnaz Kraybill family and their family and friends, (Aliya, affected with ichthyosis, her sister, Diya, and their parents Durreen and Robert), FIRST has established the Diya & Aliya’s Friends (DAF) Fund to help alleviate some of the financial burden that may be facing families with affected children.
The Inside-Out of Skin
FIRST Medical & Scientific Advisory Board members Drs. Mary Williams and Peter Elias have embarked on a project to write a book for the general public about the skin and its most critical function, the permeability barrier. They have also developed a website: www.eliasandwilliams.com, that provides reliable, scientific information on the skin, its permeability barrier and its disorders.
Drs. Peter Elias and Mary Williams have published a book about their experiences from time spent in Ethiopia. This volume contains reflections on their experience - in haiku-form poems and in photographs that illustrate these experiences. They are graciously donating a percentage of the sales of this book to FIRST. You can preview the book here.
FIRST Facebook Group Pages
FIRST for Parents - https://www.facebook.com/groups/FIRSTforParents/
FIRST for Teens - https://www.facebook.com/groups/FIRSTforTeens/
FIRST YAWI - https://www.facebook.com/groups/FIRSTYAWI/
FIRST for Adults - https://www.facebook.com/groups/FIRSTAdults/
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 949.248.RARE (7273)
ICHTHYOSES: Clinical, Biochemical, Pathogenic and Diagnostic Assessment.
FIRST is very excited to announce that Medical & Scientific Advisory Board members Drs. Peter Elias and Mary Williams, along with Debra Crumrine and Dr. Matthias Schmuth, have published a book on ichthyosis titled ICHTHYOSES Clinical, Biochemical, Pathogenic and Diagnostic Assessment. The authors hope that the book will prove to be a useful resource for families who would like to learn more about their condition. It will also be a useful tool for the staff at FIRST and is available on amazon.com for purchase. Throughout their careers, Peter and Mary have been tireless advocates for patients with ichthyosis. FIRST is very grateful for their efforts on behalf of those affected with ichthyosis.
Jane & Henry Bukaty Skin Care Fund
2616 N. Broad Street
Colmar, PA 18915
We have all experienced itch, whether from insect bites or dry skin, but millions of people worldwide have chronic or even intractable itch. Just like chronic pain, chronic itch interferes with a person's ability to function—and even affects quality of life. Living with Itch offers relief, drawing on the authors' vast knowledge of itch, the suffering it causes, and available treatments.
National Health Council - Putting Patients First
a website that provides resources to help people make informed decisions about purchasing health insurance in the marketplace.
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse National Institutes of Health
1 AMS Circle
Bethesda, Maryland 20892-3675
Pachyonychia Congenita Project
2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
2616 N. Broad Street
Colmar, PA 18915