FIRST, The Foundation for Ichthyosis and Related Skin Types, Inc.® (formerly The National Ichthyosis Foundation, Inc.), is a non-profit organization dedicated to providing support to individuals and families affected by ichthyosis and related skin disorders.  FIRST supports education and self-help through a national newsletter and its website, informational brochures, fact sheets, and videos; a biennial national conference, and its network of regional representatives and Medical Advisory Board. Members receive up-to-date information about ichthyosis and a chance to meet or correspond with others in the ichthyosis community, to give and receive information and support.  FIRST is also dedicated to finding cures for its family of disorders offering support for research into their causes and treatments.

  (A Partial List)

Generalized Scaling; Involvement Exclusively Or Primarily Limited To The Skin:
•    Ichthyosis vulgaris (IV)
•    X-linked ichthyosis (XLI)
•    ARCI-lamellar ichthyosis/ Congenital ichthyosiform erythroderma (LI/CIE)
•    Epidermolytic ichthyosis (EI) (Bullous CIE; Ichthyosis Bullosa of Siemens; formerly EHK)
•    Ichthyosis Hystrix of Curth-Macklin)
•    Harlequin ichthyosis
•    Netherton syndrome
•   Loricrin Keratoderma (Vohwinkel Syndrome (Camissa type))

General Scaling; With Involvement Of Other Organ Systems
•    Contiguous Gene syndromes with XLI
•    Sjögren-Larsson syndrome
•    Neutral lipid storage disease (Chanarin-Dorfman syndrome)
•    Refsum disease adult type
•    Gaucher Syndrome (Type 2)
•    Multiple Sulfatase Deficiency
•    Keratitis ichthyosis deafness (KID) syndrome
•    Trichothiodystrophy (Tay Syndrome: IBIDS)
•    Neu-Laxova Syndrome

More Localized Scaling; Involvement Exclusively Or Primarily Limited To Skin
•    Darier disease (keratosis follicularis)
•    Pachyonychia congenita
•    Hailey Hailey disease
•    Erythrokeratodermia variabilis
•    Erythrokeratodermia progressive symmetrica
•    Vorner-Unna palmoplantar keratoderma (PPK)
•    Striate PPK
•    Mal De Meleda

More Localized Scaling; With Involvement Of Other Organ Systems
•    Ichthyosis follicularis with atrichia and photophobia (IFAP) syndrome
•    Cardiofaciocutaneous (CFC) syndrome
•    Zunich neuroectodermal syndrome (Zunich-Kaye, CHIME syndrome)
•    Conradi-Hünerman-Happle syndrome (X-linked chondrodysplasia punctata)
•    CHILD syndrome   
•    Vohwinkel syndrome (Classic Type)
•    Papillon Lefevre syndrome
•    PPK with cardiomyopathy syndrome
•    Howel Evans syndrome (tylosis with esophageal cancer)

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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