Last updated January 1, 2013
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    The sites listed below contain information of particular relevance to ichthyosis. 

 

 

FIRST's logoF.I.R.S.T.
 

The Foundation for Ichthyosis and Related Skin Types, F.I.R.S.T., is the only national, non-profit organization dedicated to helping families with the genetic skin diseases collectively called the ichthyoses.  F.I.R.S.T. provides support, information, education and advocacy for individuals and families affected by ichthyosis.  F.I.R.S.T. supports research into causes, treatments and a cure for ichthyosis.

 

The Ichthyosis Support Group

This London-based support group provides ichthyosis support in the U.K.  They're also a registered charity.

 

Ichthyosis Foundation Belgium

Another nonprofit organization devoted to ichthyosis, based in Belgium.  Their website is available in three languages.

 

Chickens for Change Farm
Chickens for Change Farm is maintained by Erin Burke Edwards who has a little boy with ichthyosis.

 

Pachyonychia Congenita Project

Pachyonychia Congenita Project aka PC Fund was incorporated as a U.S. public charity under section 501(c)(3) in November 2003.  PC Project provides research funding, hosts symposiums, sponsors a PC registry, fosters a PC community, supports genetic testing and takes all other active steps toward successfully developing and delivering therapeutics to PC patients worldwide.

 

CenterWatch

CenterWatch is a Boston-based publishing and information services company. They provide information services used by patients, pharmaceutical, biotechnology and medical device companies, CROs and research centers involved in clinical research around the world.  Their website provides an extensive list of IRB approved clinical trials being conducted internationally. Many of these trials may be appropriate for your participation.

 

The AAD

The American Academy of Dermatology site provides the latest in news, patient information, and help in finding a dermatologist near you.

 

The Alliance of Genetic Support Groups

The Alliance of Genetic Support Groups, Inc., is a nonprofit, tax exempt organization founded in 1986 as a national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with and at risk for genetic conditions. The Alliance builds partnerships among consumers and professionals and the private and public sectors to promote optimum healthcare and enhanced quality of life for individuals identified with genetic conditions.

 

The National Institutes of Health

The NIH mission is to uncover new knowledge that will lead to better health for everyone. NIH works toward that mission by: conducting research in its own laboratories; supporting the research of non-Federal scientists in universities, medical schools, hospitals, and research institutions throughout the country and abroad; helping in the training of research investigators; and fostering communication of biomedical information.  Simply described, the goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic
disorder to the common cold.

 

The National Institute of Arthritis and Musculoskeletal
and Skin Diseases
(NIAMS) is the Institute within NIH under which ichthyosis falls.

 

The Office of Rare Diseases (ORD) has information on more than 6,000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

 

The National Foundation for Ectodermal Dysplasias

The ectodermal dysplasias (ED) are a group of genetic disorders which are identified by the absence or deficient function of at least two derivatives (i.e, teeth, hair, nails, glands) of the ectoderm.  Many people affected by ichthyosis also have ED.  Individuals affected by ED have two or more of the following symptoms: absence of sweat glands; malformed finger and/or toe nails; multiple missing teeth; sparse hair, eyelashes and brows.