Resources
In support of our Mission Statement, To improve lives and seek cures for those affected by ichthyosis and related skin types, we have collected a number of things that should help your experience managing your, or a loved ones, ichthyosis. They are available in this section of the site. We are also collecting advice from our members who are managing ichthyosis and will be adding a ‘member tips’ section to our website in the coming months.
Managing ichthyosis can put a real strain on your finances. This section offers some ways that you might be able to take advantage of to help reduce the financial burden.
They include
They include
- Free flights for crucial medical care
- Financial assistance for scholarships and purchasing lotions, medicine, and treatment necessities
- Help applying for Social Security Disability benefits
The Registry serves as a central resource to connect individuals with ichthyosis to relevant clinical trials and researchers studying specific ichthyosis types. It can provide a free genetic diagnosis for most individuals, and can notify affected individuals/families of new opportunities to participate in research and clinical trials if requested.
Our Physician Locator is a listing of dermatologists and other specialists treating patients with ichthyosis and related skin types, located in the United States. We encourage you to look for physicians within your region to help reduce the burden of travel.
We have collected a list of groups like FIRST from around the world with content in the native language of that country. Navigating a new medical condition is tough enough, without having to also struggle through translating the important information provided.
Let FIRST simplify writing letters that might be necessary from time-to-time as you manage living with Ichthyosis. We have templates for
- Letters from your doctor
- Introducing your child and Ichthyosis to a new class at school
- Writing you House Representatives or Senators to advocate for the rights of Americans with Ichthyosis
Have you ever not had the time, or energy, to talk to someone who is interested in your condition? FIRST’s Awareness Cards are an easy way to give someone a quick link to learn more about Ichthyosis.
FIRST offers four printable brochures about Ichthyosis. The topics are an Overview, For Caregivers, For Educators, and Genetics. Order yours for free from this page.
Make sure to sign-up for FIRST’s Ichthyosis Focus newsletter, our monthly eNews letter that contains up to date news, event information, and stories about other members like you.
Make sure to sign-up for FIRST’s Ichthyosis Focus newsletter, our monthly eNews letter that contains up to date news, event information, and stories about other members like you.
Do you have a child with Ichthyosis, and other children trying to understand the condition? In this section, you’ll find a list of great books about living with Ichthyosis that are written for children.
Genetic Diagnosis?
Have you received your genetic diagnosis from your doctor?
Let us know.
