The sites listed below contain
information of particular relevance to ichthyosis.
Foundation for Ichthyosis and Related Skin Types,
is the only national, non-profit organization dedicated to helping
families with the genetic skin diseases collectively called the ichthyoses.
provides support, information,
education and advocacy for individuals and families affected by
supports research into causes, treatments and a cure for ichthyosis.
The Ichthyosis Support Group
group provides ichthyosis support in the U.K. They're also a
Ichthyosis Foundation Belgium
nonprofit organization devoted to ichthyosis, based in Belgium.
website is available in three languages.
Chickens for Change
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
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
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
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
NIH mission is to uncover new knowledge
that will lead to better health for everyone.
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.
National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS) is the Institute within NIH under which
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.