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Resources The challenges facing a family with a child with one of the allied diseases are great. From first diagnosis through the progress of the disease and beyond we are faced with understanding what the disease is about, how to provide the best care possible, and how to cope through it all. Information and support are two key things that can help with the challenge of caring for a child with one of these diseases. In this section of our site we present a selection of resources that can help. CATSAD's partner organization in the United States, NTSAD has extensive information on all aspects of Tay-Sachs and the allied diseases on their website.
Caring for Children Home care for a child with neurological disease - a document written by a parent in the CATSAD PPG that outlines some practical strategies for taking care of your child at home. Symptom Management - In its Members Support Services section NTSAD provides a series of articles on various aspects of caring for children. DJ's Homepage - A great set of resources and experiences in caring for a child with Tay-Sachs disease from parents Davis and Akari. Genetics and Genetic Counselling Your Genes, Your Health - What is Tay-Sachs disease from the Dolan DNA Learning Laboratory at the Cold Spring Harbor Laboratory. DNA From the Beginning - from the same people a tutorial on basic Genetics. Canadian Directory of Genetic Support Groups - A comprehensive listing of support groups compiled by the Canadian Association of Genetic Counsellors. Carrier Testing - NTSAD in the United States has an extensive listing of information on carrier testing including testing centres in Canda. Genetics Education Centre - Genetics educational Information from the University of Kansas Medical Centre. A Lay Person's Guide to Genetics - from The Rare Genetic Diseases in Children site. Online Mendelian Inheritance in Man: a science oriented site on genetic diseases. Research CATSAD's partner organization in the United States, NTSAD, has an active research initiative. The NTSAD website also feature a good deal of information on current research and research resources. Medline - a product of the United States National Library of Medicine - is an exceptional resource for learning about recent research. It is a searchable database of over 9 million Medical and Scientific Journal abstracts. Essentially you can input a keyword or keywords and ask Medline to search for journal abstracts (summaries of articles) related to those topics. You can get free Medline access through the National Library of Medicine's PubMed page. The abstracts searchable by Medline are of a very Medical/Scientific nature so it takes some effort for a lay person to wade through the material. Also you will just get abstracts and if you find and article that is of interest you have to go to the journal publisher or a library to get it. Since the journals covered by Medline are not exactly "mass market" you'll have to go through either a University or Hospital library to track them down. Research news at the U.S. National Institute for Neurological Disorders and Stroke. |
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| For more information, please contact us: CATSAD P.O. Box 80043 Appleby Postal Outlet Burlington, ON L7L 6B1 email:info@catsad.ca website:http://www.catsad.ca CATSAD Brochure |
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| Canadian Association for Tay-Sachs and Allied Diseases, Inc. | P.O. Box 80043, Appleby Postal Outlet, Burlington, ON L7L 6B1 | email:info@catsad.ca |
