Genetic Disorders
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- Gretton Homes
- Information about the organization that offers residential care in the UK for people with Prader-Willi syndrome.
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- Latham Centers
- A residential facility, located on Cape Cod, USA, for the treatment of adults and children with Prader-Willi Syndrome. Includes details about diet, medical news, the programs, and consulting services.
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- Patient UK: Prader-Willi Syndrome
- Provides information for medical professionals on this complex genetic disorder.
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- Prader-Willi Alliance of New York
- Represents the interests of individuals in New York State with Prader-Willi syndrome, their families, and the professionals who provide services to the Prader-Willi population.
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- Prader-Willi Syndrome Association (USA)
- Characteristics include hypotonia, insatiable appetite, obesity if food intake is uncontrolled, hypogonadism and incomplete sexual development, developmental delays, variable degrees of mental retardation or functional retardation, short stature (adult), small hands and feet, mild dysmorphology, and behavior problems which can be severe.
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- The Foundation for Prader-Willi Research
- A non-profit group of volunteer families, friends and researchers aiming to raise funds for research into finding treatments.
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- The Prader-Willi Syndrome Association (UK)
- Charitable organization providing support to people with PWS, their families and carers, and the professionals who work with them. Includes information and resources.
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- University of Michigan Health System: Prader-Willi Syndrome
- Information about this syndrome in children and links to relevant articles and organizations providing advocacy and support.
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- Proteus Syndrome Foundation
- Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters.
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- Woman's 11-stone legs may be lost
- The BBC reports on a Lancashire woman's campaign to raise awareness of a condition which has left her with 11-stone legs. (May 03, 2007)
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- MedlinePlus: Rubinstein-Taybi Syndrome
- Factsheet on this condition including causes, symptoms, exams and tests, treatment, prognosis and complications.
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- Curran Family Website
- A family with two children affected by Shwachman-Diamond syndrome. Includes information about the condition and on support groups.
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- Katie's Journey
- Katie has Shwachman-Diamond Syndrome and needs a bone barrow transplant. Find disease information and links to support organizations.
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- Shwachman-Diamond Syndrome International
- Support organization helping the victims of this disease. Provides a network for families to receive information, advocacy, and emotional support, and keep abreast of the most current medical information available.
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- PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome)
- Details about the international support group organization and its mission as well as the condition. Includes an introduction, diagnosis, parent's corner, meet other people with SMS and educational considerations.
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- EA/TEF Family Support Connection
- Formed by and for families of children born with EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) and the medical professionals who treat them.
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- VACTERL Association Support Group
- Run by families, giving information support and help on vacterl association, vater syndrome and related problems.