Resources to Help a Patient
When a patient presents with confirmed or suspected ichthyosis or a Epidermal Differentiation Disorder (EDD), you don’t have to navigate it alone. FIRST has been connecting patients, families, and medical professionals for over 45 years, and we’re here to support you and your patient every step of the way.
Get Clinical Guidance via Edvyce If you need advice on diagnosis or treatment for a patient with confirmed or suspected EDD, you can submit case details securely through our Edvyce portal. Our network of ichthyosis specialists is ready to help.
Get Clinical Guidance via Edvyce If you need advice on diagnosis or treatment for a patient with confirmed or suspected EDD, you can submit case details securely through our Edvyce portal. Our network of ichthyosis specialists is ready to help.
Resources to Share with Your Patient
Genetic Diagnosis & the Ichthyosis Registry — Encourage your patient to enroll in the National Registry for Ichthyosis & Related Skin Disorders. This no-cost resource supports genetic diagnosis and connects patients to critical research that is advancing care for the entire community.
Join FIRST — FIRST membership gives patients and families access to peer-to-peer support, up-to-date medical information, and a community that truly understands their experience. It’s one of the most meaningful referrals you can make.
Clinical Trials — If your patient may be a candidate for emerging therapies, direct them to our current listing of clinical trials and patient recruitment opportunities.
Genetic Diagnosis & the Ichthyosis Registry — Encourage your patient to enroll in the National Registry for Ichthyosis & Related Skin Disorders. This no-cost resource supports genetic diagnosis and connects patients to critical research that is advancing care for the entire community.
Join FIRST — FIRST membership gives patients and families access to peer-to-peer support, up-to-date medical information, and a community that truly understands their experience. It’s one of the most meaningful referrals you can make.
Clinical Trials — If your patient may be a candidate for emerging therapies, direct them to our current listing of clinical trials and patient recruitment opportunities.
Join the Physician Finder
If you treat patients with ichthyosis and would like to be added to our listing, complete this form.
