National Tay-Sachs and Allied Diseases Association

NTSAD is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide information and support services to individuals and families affected by these diseases, as well as the public at large.

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Cameron and Hayden Lord Foundation

A foundation created in memory of Cameron and Hayden Lord, first cousins who suffered from Tay-Sachs Disease. The Foundation is dedicated to improving the quality of emotional, spiritual, and medical care for families facing complex childhood diseases.

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Mathew Forbes Romer Foundation

An organization dedicated to fighting for education, quality assurance, and research of children's genetic diseases of the brain.

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D.J. Yang's Homepage

A highly informative and beautifully detailed website chronicling the life of D.J. Yang, a little boy from Madison, Illinois, who succumbed to Tay-Sachs at age 6. This site includes links to the individual websites of many children across the world with Tay-Sachs and related diseases. D.J.?s parents provide a detailed timeline of the disease progression in their son and the assorted treatment interventions employed along the way.

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Dylan James Manning's Homepage

The website for D.J. Manning, a little boy in Pennsylvania with Tay-Sachs Disease. His parents started the Dylan James Manning Foundation, dedicated to family support, advocacy, and fundraising for research towards a cure.

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Piccola Leda Malattia Tay Sachs

This website details the life of Leda Dell 'Aiuto, a sweet little girl in Italy, struggling with Tay-Sachs Disease. As it is written in Italian, I was unable to understand most of the text; however, the love that shines through this site is unmistakable. Little Leda's smile lights up the website - it is worth visiting the site just to view the incredible beauty in Leda's sweet eyes.

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Comfort, Caring, and Elizabeth

A succinct and well written personal guide to home care for children with progressive neurologic illnesses.

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PBS Nova Segment on Tay Sachs

A 9 minute video detailing how the genetics of Tay Sachs doubly and tragically affected one family. (Click on video segment # 3, ?One Wrong Letter?)

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Duke University Pediatric Stem Cell Transplantation

Link to the Pediatric Stem Cell Transplantation program at Duke University Medical Center. (Contact Dr. Joanne Kurtzberg for details of protocols for Tay-Sachs and related diseases.)

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Genetics Home Reference

The National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. This site includes an excellent set of links to educational resources, genetic testing labs, and medical journal abstracts.

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Your Genes / Your Health

An easy to navigate multimedia guide to understanding Genetic Disorders.

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National Human Genome Research Institute

The website for the National Institute of Health?s Human Genome Project, featuring information regarding a wide spectrum of genetic diseases.

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National Organization for Rare Disorders

NORD is a federation of voluntary health organizations committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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National Institute of Neurological Disorders and Stroke

The mission of NINDS is to reduce the burden of neurological disease through the support of biomedical research on disorders of the brain and nervous system.

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March of Dimes Medical References

The March of Dimes website covers a wide range of perinatal and genetic topics.

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Madisons Foundation

Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication amongst parents, physicians and medical experts.

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Orphanet

ORPHANET is a database dedicated to information on rare diseases and orphan drugs. It aims to improve management and treatment of genetic, autoimmune or infectious rare diseases, rare cancers, or diseases that lack accurate diagnosis.

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Fletcher Photography

Jay Fletcher is an outstanding photographer and a remarkable individual. The time and compassion he invested in photographing Rachaeli was a reflection of his immense love for his art and his for his subjects. His work can be viewed across his website and at his Atlanta studio in Phipps Plaza.

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