Resources


This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials endorse any treatments, products or items presented here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.


Books:

A Children's House for the Soul

An organization in Texas with the mission to encourage and unite children and their famiies affected by skin disease and birthmarks by providing opportunities for social, emotional and spiritual support.

Different Beautiful, A

FIRST member, Courtney Westlake explores what her family has discovered in raising a child with physical differences and what she has learned about true beauty. Through her personal insights and experiences, Courtney shares how we can all learn to find and celebrate God’s version of beautiful in our lives, especially within our differences and struggles

Different Just Like MeDifferent 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.

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.

ICHTHYOSES: Clinical, Biochemical, Pathogenic and Diagnostic Assessment.

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.

I Don't Want to Be a Frog


 

I've Got Spots


 

Living with ItchLiving 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.
 

Lucy's Umbrella


 

No Such Thing As Normal

https://nosuchthing.co/products/no-such-thing-as-normal-childrens-book

Perfectly Different
 

 

Tolerated Not Wanted

Written and published by an individual affected with ichthyosis


Camps:

Camp DiscoveryCamp Discovery

The American Academy of Dermatology's (AAD) Camp Discovery program is for children ages 8-16 who have a chronic skin disease.

Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions having fun and participating in activities such as swimming, horseback riding, arts and crafts and many more.

Camp WonderCamp Wonder

Camp Wonder is a FREE summer camp for children with any skin disorder, ages 6 - 16. Each year, children with chronic and life-threatening skin disorders from around the country take a break from being a patient for a week and focus on just being a kid. Camp Wonder is a special place free of judgement and stares! We create an environment of acceptance and support to empower the children to be themselves


Disability Resources

Access Pass

A free, lifetime pass, plus a $10 handling fee. - available to U.S. citizens or permanent residents of the United States that have been medically determined to have a permanent disability (does not have to be a 100% disability) that provides admittance to more than 2,000 recreation sites managed by five Federal agencies.
Information about this program is available here.

Disability Resource Database - Iowa Compass

Center for Disabilities & DevelopmentDisability Resource Database - Iowa Compass
100 Hawkins Dr. #S295
Iowa City, IA 52242-1011
800-779-2001
877-686-0032 TTY


Facebook Groups:

FIRST Facebook Groups


Financial Aid:

Diya & Aliya's Friends (DAF) Skin Care FundDiya & 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.

Financial Aid for Rare Disease

Information about financial aid for rare diseases is available on the NIH website via this link.

Jane & Henry Bukaty Skin Care FundJane & Henry Bukaty Skin Care Fund

FIRST office
PO Box 1067
Lansdale, PA 19446
Phone:  215-997-9400
Fax:  215-997-9403

UFIRST Scholars

FIRST office
PO Box 1067
Lansdale, PA 19446
Phone:  215-997-9400
Fax:  215-997-9403


International Groups:

International Groups

United Lingdom France Ireland

 

 


Organizations:

American Academy of DermatologyAmerican 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 TherapyAmerican 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

The Coalition of Skin DiseasesThe Coalition of Skin Diseases

4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
202-243-0115

The Genetic AllianceThe 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 GenesGlobal Genes

World Headquarters
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone:   949-248-RARE (7273)

» Global Genes RARE Toolkit

ichthyosis.com

ichthyosis.com

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

National Health Council - Putting Patients FirstNational Health Council - Putting Patients First

A website that provides resources to help people make informed decisions about purchasing health insurance in the marketplace.
» PuttingPatientsFirst.net

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Information Clearinghouse National Institutes of HealthNational Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, Maryland 20892-3675
Phone: 301-495-4484
TTY: 301-565-2966
Fax: 301-718-6366

National Organization for Rare DisordersNational Organization for Rare DisordersNational Organization for Rare Disorders

P.O. Box 8923
New Fairfield, CT 06812-8923
NORD's Rare Caregiver Respite Program

Pachyonychia Congenita Project

PC Project
2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
877-628-7300
            » www.pachyonychia.org

Pityriasis Rubra Pilaris (PRP)

» www.PRPalliance.com


Additional Resources:

DermAtlas

DermAtlas

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

DermWeb

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

Gene Therapy Basics

American Society of Gene & Cell Therapy provides information about the basics of gene therapy, via this link.

Navigating Insurance

Visit Global Genes for information about navigating health insurance.

Needy Meds

FIRST has partnered with NeedyMeds whose mission statement is to educate and empower those seeking affordable healthcare by providing information on healthcare programs, offering direct assistance and facilitating programs.
NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can't afford medications and healthcare costs. More than 1.3 million patients, family members, healthcare professionals, social workers and patient advocates use the NeedyMeds website each year. They update data on over 9,000 assistance programs, 15,000 free/low-cost/sliding scale clinics and nearly 1,500 drug discount coupons. All their information is accessible online, https://www.needymeds.org/ at no charge and without registration. For specific ichthyosis information, please click here.


This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
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