Prader-Willi Syndrome - Services & Other Resources

For Parents and Patients

National Organization of Rare Disorders (NORD)
Provides information about many uncommon conditions, including rare "orphan" diseases, and links to organizations that provide services to individuals with rare diseases.

Prader-Willi Syndrome Association (USA)
A strong national organization of families and professionals, PSWA (USA) offers a toll-free helpline, a bimonthly newsletter and numerous publications about PWS, a World-Wide-Web page, and annual family conference and scientific meeting, and chapters throughout the country to provide local family support and advocacy.

Prader-Willi syndrome (Genetics Home Reference)
Information about PWS from the National Library of Medicine's Genetics Home Reference site.

Prader-Willi syndrome (MedlinePlus)
Information about PWS and links to other reliable sources of information from the National Library of Medicine

SSI guide for children with PWS (PWSA USA)

Utah Prader-Willi Syndrome Association
Provides families and professionals with a network of support, resources, and information to promote awareness of the syndrome and raise funds that will directly benefit Utahn’s with PWS.

For Professionals

Central Adrenal Insufficiency (PWSA USA)

Growth Hormone Consensus Statement (PWSA USA) ( 64 KB)

Growth Hormone and PWS Policy Statement (PWSA USA)
From the Prader-Willi Syndrome Association (USA).

Heartland Regional Genetics and Newborn Screening Collaborative
Region 5 of the Genetic Service and Newborn Screening Regional Collabortative Groups; provides information for families and providers including listings of local resources.

Intermountain Healthcare Clinical Genetics Institute
provides clinical medical genetics services and genetic couseling at two outreach clinics in Salt Lake City and Logan.

New Medical Alert Info (PWSA USA) ( 1.5 MB)

Orthopedic concerns in children with PWS from the PWSA (USA)

Osteoporosis in individuals with PWS (PWSA USA)

PWS genetic testing (GeneTests)
List of laboratories providing testing for Prader-Willi syndrome.

Postoperative Guidelines (PWSA USA)

Prader-Willi Syndrome Review (GeneReviews)
Detailed overview of Prader-Willi syndrome, testing, genetics, resources, reviews, and research; hosted by NCBI (National Center for Biotechnology Information).

Prader-Willi syndrome (OMIM)
Extensive review of the literature, including clinical features and gene therapy; from the Online Mendelian Inheritance in Man site, hosted by Johns Hopkins University.

Recommendations for Evaluation of Breathing Abnormalities (PWSA USA)

SSI guide for children with PWS (PWSA USA)

Adaptive Recreation

See all Adaptive Recreation services providers (43) in our database.

Adult Genetics

See all Adult Genetics services providers (2) in our database.

Assistive Technology

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Behavioral Programs

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Camps

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Cancer Genetic Counseling/Risk Assess

See all Cancer Genetic Counseling/Risk Assess services providers (2) in our database.

Child Psychiatry

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Child Psychology

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Developmental Pediatrics

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Disability Employment

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Disability/Diagnosis-Specific Advocacy

Utah Prader-Willi Syndrome Association, more info...
2652 E. Nottingham Way
Salt Lake City, UT 84108
Phone: 801-582-0998
http://www.upwsa.org/

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Early Intervention Programs

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Family Therapy

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General Dentistry for CSHCN

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Genetics Laboratories

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Group Homes

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Gynecology (Ped/Adol, Special Needs)

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Health Insurance/Funding, Transition

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Learning Evaluations

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Local Support Groups, Disability/Diag

Utah Prader-Willi Syndrome Association, more info...
2652 E. Nottingham Way
Salt Lake City, UT 84108
Phone: 801-582-0998
http://www.upwsa.org/

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Mental Health Clinics, Public

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National Support Groups, Disab/Diag

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Neuropsychology

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Nutrition/Dietary

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Occupational Therapy

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Pediatric Cardiology

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Pediatric Dentistry

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Pediatric Dermatology

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Pediatric Endocrinology

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Pediatric Gastroenterology

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Pediatric Medical Genetics

Medical Genetics, more info...
100 N Mario Capecchi Dr
Salt Lake City, UT 84132
Phone: 801-231-3599
Fax: 801-585-7252
http://healthcare.utah.edu/pediatrics/Genetics/index.php

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Pediatric Otolaryngology

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Pediatric Pulmonology

Pediatric Pulmonology, more info...
100 N Mario Capecchi Dr
Salt Lake City, UT 84133
Phone: 801-231-3599
http://healthcare.utah.edu/pediatrics/Pulmonary/index.php

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Pediatric Urology

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Physical Therapy

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Prader-Willi Clinics

Prader-Willi Syndrome Clinic , more info...
44 Mario Capecchi Drive
Salt Lake City, UT 84114
Phone: 801-712-0501

Prenatal Genetic Counseling/Diagnosis

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Recreation Therapy

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SSI, Supplemental Security Income

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Sleep Studies/Polysomnography

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Social & Recreational Opportunities

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Social Work

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Speech/Language Therapy

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Vocational Education

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