Resources


 

American Academy of Dermatology

930 E. Woodfield Road
Schaumburg, IL 60173
Phone 847.330.0230
Toll Free: 866.503.SKIN (7546)
E-mail: mcr@aad.org
 
AAD Washington, DC Office
1445 New York, Ave., NW. Suite 800
Washington, D.C. 20005-2134
Telephone: 202.842-3555
Fax: (202) 842-4355
 

 

 

 


American Society of Gene and Cell Therapy
555 East Wells Street
Suite 1100
Milwaukee, WI 53202
voice: 414.278.1341
fax: 414.276.3349
info@asgct.org




Camp Discovery

 


  Camp Wonder

 


The Coalition of Skin Diseases
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
202.243.0115



DermAtlas
International collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images 

 


DermWeb
DermWeb is owned & operated by:
The Department of Dermatology and Skin Science
University of British Columbia

835 West 10th Avenue
Vancouver, B.C.
Canada  V5Z 4E8

Phone:  604.875.4747
Fax:  604.873.9919
Email: webmaster@dermweb.com

 


Different Just Like Me

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
800.779.2001
877.686.0032 TTY


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.


Ethiopian Encounters
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.


The Genetic Alliance
4301 Connecticut Avenue, NW Suite 404
Washington, DC 20008-2304
Phone 202.966.5557
Fax: 202.966.8553
Helpline Only: 800.336.GENE
E-mail: info@geneticalliance.org 


Global Genes
World Headquarters
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone:   949.248.RARE (7273)

Global Genes RARE toolkit.


 

ichthyosis.com
P.O. Box 8923
New Fairfield, CT 06812-8923


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.


 


International Groups


Jane & Henry Bukaty Skin Care Fund
FIRST office
2616 N. Broad Street
Colmar, PA  18915
Phone:  215.997.9400
Fax:  215.997.9403

 


Living with Itch

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 Institute of Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse National Institutes of Health
1 AMS Circle
Bethesda, Maryland 20892-3675
Phone: 301.495.4484
TTY: 301.565.2966
Fax: 301.718.6366



National Organization for Rare Disorders
P.O. Box 8923
New Fairfield, CT 06812-8923


 

Pityriasis Rubra Pilaris (PRP) www.PRPalliance.com

 

 


UFIRST Scholars
FIRST office
2616 N. Broad Street
Colmar, PA  18915
Phone:  215.997.9400
Fax:  215.997.9403



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