| Additional
Prader-Willi Syndrome Resources |
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| Prader-Willi
Syndrome Association (USA) -
organized in 1975, Prader-Willi Syndrome Association (USA) is
dedicated to serving individuals affected by Prader-Willi Syndrome
(PWS), their families, and interested professionals. The office
is located in Sarasota, Florida and provides information, education,
and support services to members including a toll-free telephone
number for information and referrals; annual national conference
for families, professionals, and scientists; nationwide network
of local chapters, parents, and professionals, research funding
to expand knowledge and treatment options, representation at
the international level, a bimonthly newsletter; publications
and audiovisual presentations about PWS; a nationwide network
of local chapters, parents, and professionals; research funding
to expand knowledge and treatment options; representation on
the international level. Hospitals, physicians, and parents
from all over the world consult with PWSA (USA) with medical
emergencies and questions daily. |
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| California
Medical Centers, Clinics, Physicians Treating PWS |
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| Speech
and Language Resource and Assistance |
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| PWS
Playroom Parent-sponsored
website provides helpful information about various early intervention
techniques, including feeding issues, G-tube, meal management
ideas, pre-speech ideas, sensory integration, and much, much
more. |
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Online
Information Sharing and Support Groups
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PWCFmembers
Information sharing group for California residents and
members of PWCF. |
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PWSA
(USA) eSupport Groups National information sharing
and online support groups organized according to child's
age:Ages Birth to 5 Years; 6-12 Years; Teens; Spanish
Speaking; Siblings |
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| International
Prader-Willi Syndrome Organization International information
about PWS translated into various languages. |
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| UK
Human Genome Mapping Project Resource Center |
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| International
PWS Organization - a consolidating body for all national PWS
associations throughout the world. IPWSO is organized to improve
the quality of life for all people with PWS and their families,
with the stated goals of helping them realize their wishes,
lead a life as normal as possible, and be in a position to achieve
what is allowed by the constitution of their country. Information
about PWS is translated into various languages, including Afrikaans,
Chinese, Croation, Danish, Dutch, English, Finnish, French,
German, Italian, Polish, Portuguese, Romanion, Spanish, Swedish. |
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| The
Arc's Home Page - the country's largest voluntary organization
committed to the welfare of all children and adults with mental
retardation and their families. |
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