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 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.
Extraordinary! A Book for Children with Rare Diseases
Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease.
A child with ichthyosis is represented on page five.
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.
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 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
Luke and the Tiger
Luke wakes up in the middle of the night, because there is a tiger next to his bed. The tiger can't find her babies and she asks Luke for help. During their adventure, Luke discovers that various animals have their own story regarding their skin, just like he has.
No Such Thing As Normal
https://nosuchthing.co/products/no-such-thing-as-normal-childrens-book
Perfectly Different
Skin-vincible: A Story of a Superstar with Ichthyosis
Meet Cece, a young, spunky, confident girl who loves to sing and dance! She was born with ichthyosis (ick-thee-oh-sis;
more specifically the congenital ichthyosiform erythroderma type), a rare genetic skin condition, and spends a lot of extra time caring for her skin. Cece doesn’t let her skin condition define her—she is a great friend, sister, and performer. Follow Cece on the day of her big performance in her school’s talent show, while learning about skin, ichthyosis, and standing up against bullying!
For anyone who has ever felt different or alone, this book was written for you with love.
Order from Mascot Books: https://mascotbooks.com/mascot-marketplace/buy-books/childrens/picture-books/skin-vincible/
Order from Amazon: https://www.amazon.com/Skin-vincible-Superstar-Ichthyosis-Andrea-Rustad/dp/1637553579
Order from Barnes & Noble: https://www.barnesandnoble.com/w/skin-vincible-andrea-rustad/1142291500
Tolerated Not Wanted
Written and published by an individual affected with ichthyosis
Camps:
Camp 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 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.
Letter template for physician
Angel Flights
Angel Flights provide free flights to individuals requiring crucial medical care at distant facilities.
Assisted Living for Seniors with Disabilities
Many seniors develop diverse disabilities that can impair how and where they live. There are also those who have lived with a disability through adulthood, causing existing issues to compound in aging and affecting suitable housing and care options.
Assisted Living for Seniors with Mental Health Conditions
If you've found your mental health declining as you age, you’re not alone. One quarter of all seniors report anxiety or depression.
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
Online College Guide for Deaf and Hard-of-Hearing Students
According to the National Deaf Center of Postsecondary Outcomes, deaf and hard of hearing students are more likely to take online courses. This preference could be due to the flexibility of setting up their accommodations like online captioning and ASL interpreters.
Despite the benefits of online courses, there are still challenges for deaf and hard of hearing students.
Our guide helps deaf and hard of hearing students learn about online accommodations colleges offer to comply with the American Disabilities Act, popular listening devices and applications, and scholarships. We also provide a list of the 5 best colleges for students with hearing disabilities as well as additional helpful resources.
You can view Intelligent.com’s guide here: https://www.intelligent.com/deaf-and-hard-of-hearing-student-online-college-guide/
Facebook Groups:
FIRST Facebook Groups
When in Facebook, search for "FIRST Ichthyosis" and all of FIRST's private Facebook groups will come up. Request to join the group(s) that that you qualify for. Then fill out a "Contact Us Form". If you qualify to join, FIRST Admins will add you to the group. These groups are for support and to ask questions.
Financial Aid:
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.
Financial Aid for Rare Disease
Information about financial aid for rare diseases is available on the NIH website via this link.
FIRST-Aid Skin Care Fund
FIRST recognizes that our members may sometimes have a tough time navigating through the emotional, psychological, and the logistical pressures of life associated with being affected with ichthyosis. Maybe financial stress can add to that stress making things feel almost impossible. How do you purchase your medical needs if prices seem to continuously increase, especially if you are barely making it now? FIRST IS OFFERING HELP.
UFIRST Scholars
The UFIRST SCHOLARS Program was established in 2010 by a seed gift from Valerie & David Scholl. The Scholls are grandparents to an affected granddaughter who wanted to provide an opportunity for affected students to advance their post-secondary education in partnership with FIRST.
International Groups:
International Groups
Organizations:
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
Angel Flight East
Angel Flight East (AFE) has provided free flights to individuals requiring crucial medical care at distant facilities for 30 years.
The Coalition of Skin Diseases
4301 Connecticut Avenue, NW, Suite 404
Washington, DC 20008-2369
202-243-0115
EI Cure Project
Email: eicureproject@gmail.com
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)
ichthyosis.com
P.O. Box 8923
New Fairfield, CT 06812-8923
Make-A-Wish 
A wish experience can be a game-changer for a child with a critical illness. This one belief guides us in everything we do at Make-A-Wish. It inspires us to grant life-changing wishes for children going through so much. It compels us to be creative in exceeding the expectations of every wish kid. It drives us to make our donated resources go as far as possible. Most of all, it's the founding principle of our vision to grant the wish of every eligible child.
National 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 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
NORD's Rare Caregiver Respite Program
Participate With the First-Ever Rare Disease Diversity Survey!
The National Organization for Rare Disorders (NORD) joined forces with the Rare Disease Diversity Coalition (RDDC), the nation’s leading voice for alleviating the disproportionate burden of rare diseases on communities of color, to conduct a first-ever national survey of underrepresented rare disease patients and caregivers to better understand their unique perspectives and experiences in accessing and affording health care. https://www.surveymonkey.com/r/RareDiseaseDiversitySurvey
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)
Additional Resources:
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
Gene Therapy Basics
American Society of Gene & Cell Therapy provides information about the basics of gene therapy, via this link.
Good Rx
The price of a drug can differ by more than $100 between pharmacies. Find out how much medications cost, get the best prices in your area, and save up to 80% with GoodRx. GoodRx offers same-day appointments with an online healthcare provider, starting at $19.
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., i.e. for Tazorac https://www.needymeds.org/brand-drug/name/Tazorac
