Family Village
www.familyvillage.wisc.edu
Family Village is a Web site maintained by the Waisman
Center, University of Wisconsin-Madison. Family Village is a global community
that integrates information, resources, and communication opportunities
on the Internet for persons with cognitive and other disabilities, for
their families, and for those that provide them services and support.
Genetic and Rare Diseases Information Center
http://rarediseases.info.nih.gov/html/resources/info_cntr.html
Established by the National Human Genome Research Institute
(NHGRI) and the Office of Rare Diseases (ORD), the Genetic and Rare Diseases
Information Center employs experienced information specialists to answer
in English or Spanish questions from the general public, including patients
and their families, health care professionals and biomedical researchers.
Genetic and Rare Conditions Site
www.kumc.edu/gec/support/
Lay advocacy and support groups, information on genetic
conditions /birth defects for professionals, educators, and individuals,
National and International organizations.
Medline Plus Health Information
www.nlm.nih.gov/medlineplus/
This extensive database is maintained by the National
Library of Medicine and the National Institutes of Health.
National Early Children Technical Assistance Center, NECTAS
www.nectac.org
The National Early Childhood Technical Assistance Center
supports the implementation of the early childhood provisions of the Individuals
with Disabilities Education Act (IDEA). Their mission is to strengthen
service systems to ensure that children with disabilities (birth through
five) and their families receive and benefit from high quality, culturally
appropriate, and family-centered supports and services.
National Institute of Mental Health
www.nimh.nih.gov/health/
This section offers information from NIMH on current research regarding mental illnesses.
National Institute on Deafness and Other Communication Disorders
www.nidcd.nih.gov
The National Institute on Deafness and Other Communication
Disorders (NIDCD) is one of the Institutes that comprise the National
Institutes of Health (NIH). NIH is the Federal government's focal point
for the support of biomedical research. NIH's mission is to uncover new
knowledge that will lead to better health for everyone.
National Mental Health Association
www.nmha.org
The National Mental Health Association is the country's
oldest and largest nonprofit organization addressing all aspects of mental
health and mental illness.
National Mental Health Information Center
www.samhsa.gov
SAMHSA is the Federal agency charged with improving the quality and
availability of prevention, treatment, and rehabilitative services in
order to reduce illness, death, disability, and cost to society resulting from
substance abuse and mental illnesses.
National Organization of Rare Diseases
www.rarediseases.org
The National Organization for Rare Disorders (NORD),
a 501(c)3 organization, is a unique federation of voluntary health organizations
dedicated to helping people with rare "orphan" diseases and
assisting the organizations that serve them. NORD is
committed to the identification, treatment, and cure of rare disorders
through programs
of education, advocacy, research, and service.
Rare Cancers and Related Disorders
www.cancerindex.org/clinks2d.htm
There are well over a hundred different kinds of cancer,
these include very rare types not covered in this guide.
In addition there are a variety of "associated disorders",
these may include a) diseases that are not cancerous but may be related
to cancer / cancer
treatment, b) benign diseases that are often treated
by oncologists, and c) benign diseases that may result in an increased
risk of subsequently
developing cancer.
