Resources
Anyone may find useful information and links in any of these sections.
The Public/Family links are aimed more at community resources and
basic information. The Professional Links are more technical and
may be of better use to those practitioners who see patients with
genetic conditions. The Education links may be most useful to those
wishing to learn more about genetics in general.
Public/Family
Links
Family
Village
This site describes itself as "a global community for disability-related
resources". Includes comprehensive links to disease specific
medical information, contacts, support groups, discussion groups,
websites, and much more.
These centers are
part of a statewide network that provides free and confidential
assistance to families and providers. The five centers offer
information, referral, follow-up, parent support services, and
links to local agencies that can help coordinate medical, social,
legal, educational, behavioral, and developmental needs for
children and youth. Click on the links below to get more information
about the center in your area.
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Western
Center - Chippewa County Department of Public
Health, Chippewa Falls
National
Organization for Rare Disorders (NORD)
This site is dedicated to helping people with rare 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.
Genetic
Alliance
The Genetic Alliance (formerly the Alliance for Genetic Support
Groups) is an international organization of families, professionals
and genetic support organizations that works to improve the quality
of life for individuals dealing with a genetic condition. This site
offers disease specific information and resources (including support
group information) as well as a "helpline"-direct contact
to a genetic counselor for more information or to discuss questions
and concerns.
Wisconsin
First Step
An information and referral service to assist Wisconsin families
who have children with special healthcare needs.
March of
Dimes
This site provides excellent information for families concerning
multiple pregnancy issues, including birth defects, genetic disorders,
and genetic counseling. Fact sheets on various conditions are available
on-line.
Wisconsin
Statewide Genetics (link coming soon)
This site provides links to many different state agencies and
programs that can offer assistance to individuals and families,
including Medicaid/Badger Care, the Wisconsin Well Woman Program,
Newborn Screening, and the Birth Defects Registry and Surveillance
Program.
Wisconsin
Newborn Screening Laboratory
The Wisconsin Newborn Screening (NBS) Laboratory Homepage is
dedicated to promoting and encouraging the sharing of knowledge,
communication and resources with health care agencies, families
and anyone else interested in NBS for the benefit of babies
born in Wisconsin.
National
Society of Genetic Counselors
Contains information for consumers about genetic counseling and
how to find a genetic counselor. Also contains career information,
useful information for the media, a page for NSGC members and describes
the NSGC mission.
Blazing
a Genetic Trail
A site from the Howard Hughes Medical Institute including information
on genetic research, the Human Genome Project, genetic disorders
and a glossary.
National
Human Genome Research Institute - National Institutes of Health
The National Human Genome Research Institute, part of the National
Institutes of Health, created this site which contains information
on the Human Genome Project, the Ethical, Legal and Social Implications
(ELSI) of the Human Genome Project, and resources on policy, research,
grants, media, and more.
Cancer.gov
This site provides recent and accurate cancer information from the
National Cancer Institute of the National Institutes of health.
Wisconsin
Stillbirth Service Program
A site "dedicated to serving families who experience the tragedy
of stillbirth and the professionals who care for them". This
site includes on-line information for families, stillbirth evaluation
protocols, and much more.
Professional
Links
KUMC
Clinical Genetics Site
University of Kansas Medical Center site with clinical, research,
and educational resources for genetic professionals. Includes links
to Online Mendelian Inheritance in Man, genetic support groups,
March of Dimes, clinical genetic centers, educational resources,
and more. Very comprehensive.
Centers
for Disease Control - Office of Genomics and Disease Prevention
The mission of the Office of Genomics and Disease Prevention is
to integrate advances in human genetics into public health research,
policy, and programs. Contains links to genetics reports and publications,
genetic databases, CDC genetics fact sheets, related CDC sites (e.g.
birth defects, newborn screening), and more.
Gene
Tests-Gene Reviews
GeneTests is a searchable directory of medical genetics laboratories
and genetics clinics. GeneReviews (formerly GeneClinics) is an expert-authored,
peer-reviewed clinical information resource for the diagnosis, management,
and genetic counseling of individuals and families with specific
inherited disorders. Registration required.
Wisconsin
Newborn Screening Laboratory
The Wisconsin Newborn Screening (NBS) Laboratory Homepage is dedicated
to promoting and encouraging the sharing of knowledge, communication
and resources with health care agencies, families and anyone else
interested in NBS for the benefit of babies born in Wisconsin.
Organization of Teratology Information Services
This website includes information on Teratology Information Services
(TIS) which are comprehensive and multidisciplinary resources for
medical consultation on prenatal exposures. TIS interpret information
regarding known and potential reproductive risks into risk assessments
that are communicated to individuals of reproductive age and health
care providers. Also includes fact sheets on selected teratogens.
Family
Village
Excellent site that is appropriate for both professionals and families
looking for more information on specific diagnoses. Includes comprehensive
links to disease specific medical information, contacts, support
groups, discussion groups, websites, and much more.
Regional
Children and Youth with Special Health Care Needs Centers
These centers are part
of a statewide network that provides free and confidential assistance
to families and providers. The five centers offer information, referral,
follow-up, parent support services, and links to local agencies
that can help coordinate medical, social, legal, educational, behavioral,
and developmental needs for children and youth.
Wisconsin Statewide Genetics (link coming soon)
This site provides links to many different state agencies and programs
that can offer assistance to individuals and families, including
Medicaid/Badger Care, the Wisconsin Well Woman Program, Newborn
Screening, and the Birth Defects Registry and Surveillance Program
Wisconsin
Association for Perinatal Care (WAPC)
WAPC is a multidisciplinary organization providing leadership and
education for improved perinatal health outcomes. This website includes
information on WAPC activities including position statements, educational
opportunities, and grant opportunities.
Genetics
Societies
This site provides links to genetic organizations such as the American
College of Medical Genetics and American Society of Clinical Genetics
as well as genetic education information resources.
March of Dimes
This site provides excellent information for families concerning
multiple pregnancy issues, including birth defects, genetic disorders,
and genetic counseling. Fact sheets on various conditions are available
on-line.
Education Links
DOEgenomes.org
Links to the genome programs of the U.S. Department of Energy Office
of Science. Offers extensive information on the Human Genome Project
and related topics. Provides useful educational resources for students
and teachers.
GEM database
The Genetic Education Materials (GEM) Database is a searchable listing
of public health genetics policy documents and clinical genetics
educational materials.
Genetics
Home Reference
The Genetics Home Reference is the National Library of Medicine’s
web site for consumer information about genetic conditions and the
genes responsible for those conditions.
Genetic
Science Learning Center
This site is dedicated to helping people understand how genetics
affects their lives and society. The site also contains genetics
resources for teachers.
National Human Genome Research Institute
The National Human Genome Research Institute website provides information
for professionals and consumers related to genomic research, genetic
disease, and related policy and ethics issues. Includes excellent
educational resources for students and teachers.
Wisconsin
Teacher Enhancement Program
The Wisconsin Teacher Enhancement Program, at the University of
Wisconsin-Madison, is a national professional development program
for K-14 science and health educators. Includes information on the
Summer Institute which offers courses on the Human Genome Project.
Genetic Resources Home Page
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