The self-help group movement is arguably both the most exciting and least recognized resource for improving public health in the United States. Approximately 10 million Americans participate in self help groups (also known as mutual help or support groups) each year, and 25 million have done so in their lifetimes. Deciding whether to undergo genetic testing is not easy. Organizations serve as a link in the network for family caregivers and patients, such as those who are homebound, mentally ill, elderly, or suicidal or who have a specific disorder, such as multiple sclerosis. The groups help families and patients find a balance of responsibility.
The groups are supported by various national and local organizations for people who share a common problem. Commonly cited factors include the social support that results from members sharing the same problem or life situation, the behavioral learning and sense of hope resulting from exposure to positive role models, the specific technologies or programs of change that groups offer (for example, the 12 steps of Alcoholics Anonymous [AA] and similar groups), and in some cases the politicization of members into advocates for changes in society at large.
http://www.kumc.edu/gec/support/ This website has both national and international links to information and support groups for individuals, educators and medical professionals.
http://www.geneticalliance.org/search.html This impressive link allows you to search their directory of support groups and other services offered by various institutions involved in genetics. The Genetic Alliance (formerly 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.
http://www.support-group.com/ Support-Group.com allows people with health, personal, and relationship issues to share their experiences through bulletin boards & online chat and provides links to support-related information on the Internet. This site is not genetics specific.
http://www.state.nh.us/sdp/prolinks.html A complete listing of professional resources in NH. As part of NH Self-Determination Project.
http://icomm.ca/geneinfo/index.html Genetic Information and Patient Services, Inc (GAPS) A non-profit 501(c)(3) charity providing free information to the public on genetic disorders and birth defects. Your gateway to Internet information about genetic disorders and birth defects
http://www.nhfolkfest.org/nhsl/frc/dissupport.htm#Advocates This site, called the Family Resource Center lists ongoing events & support groups health & disabilities in NH.
http://www.ornl.gov/hgmis/resource/assist.html#support This link is part of the U.S. Human Genome Project (HGP), which is composed of the DOE and NIH Human Genome Programs. The project is the national coordinated effort to characterize all human genetic material by determining the complete sequence of the DNA in the human genome. This site has it all! Everything you want to know about the HGP.
http://www.medwebplus.com/subject/Genetics.html MedWeb Plus: Encyclopedia-like list of topics related to genetics, from genetic disorders to privacy issues and new research. By clicking on the subtopic, you will receive links to relevant websites.
http://www.nhgri.nih.gov/index.html The National Human Genome Research Institute: This institute directs the Human Genome Project. A comprehensive site, with good coverage of social/ethical implications and policy issues, and a terrific glossary.
http://www.cff.org/ Cystic Fibrosis Foundation: Provides information on research and clinical trials regarding CF, as well as a state by state listing of care centers supported/accredited by the CF Foundation (including gene therapy centers.)
http://www.dartmouth.edu/~cysfib/ Cystic Fibrosis Research at Dartmouth Medical School: Ongoing research into CF patient care and education, CF clinical research, CF basic science research, and associated links.
http://www.mdausa.org/home.html Muscular Dystrophy Association: Offers information on the disease, research, and community programs.
http://www.nhmodimes.org/ NH Chapter of the March of Dimes: Information on events, advocacy, and a good prenatal health section.
http://www.ornl.gov/TechResources/Human_Genome/resource/education.html
http://www.vh.org/Providers/Textbooks/ClinicalGenetics/Contents.html
http://www.nhms.org/default.htm New Hampshire Med Net facilitates access to a variety of resources for medical providers in our state. Many new Internet based communication and education initiatives are under development.
Screening/Diagnosis Support Groups Pharmacogenetics Resources Therapy what's new Social and Ethical Implications Policy & Law Education Other States Glossary