Selected Internet Sites for PWS Families and Advocates

Parent/Family Support
The Family Village
The Arc of the United States
  * POSITIVE BEHAVIOR SUPPORTS GUIDELINE
Learning Disabilities and ADHD
  Through the Looking Glass (TLG) is a nationally recognized non-profit agency and first National Resource Center for Parents with Disabilities. They provide direct services, training, materials and research concerning families in which a child, parent or grandparent has a disability or medical issue.
Alliance of Genetic Support Groups
Mail list for Prader-Willi Syndrome: ages 0-5 Support to subscribe
Mail list for Prader-Willi Syndrome: ages 6-12 Support to subscribe
Mail list for Prader-Willi Syndrome: Teen Support  to subscribe
  Mail list for Prader-Willi Syndrome: Siblings Support to subscribe

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Medical
  UHCCF Assistance Grants for Medical Services
Genline:   Medical Genetics Knowledge Base
  Prader-Willi Syndrome and Growth Hormone
University of Chicago- Department of Human Genetics
The Children’s Institute - Pittsburg, PA
National Library of Medicine - search articles
  AllRefer.com - Reference & Health
  Medicaid Listings by State, Country

Medicaid Reference Desk
   AllRefer Health - Comprehensive and credible health information on more than 4000 topics.
  Mun-H-Center, a Swedish national orofacial centre - Click left corner flag for English
  University of Maryland Medicine Division of Pediatric Endocrinology 
  Gastroenterology Journal Watch Edited and reviewed by more than 80 physicians, JWatch regularly combs 180 medical journals for important findings in Gastroenterology.
  Genetics Home Reference - Genetics Home Reference is the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions. http://ghr.nlm.nih.gov/

Medical Insurance Empowerment Program:

SNAP - Special needs advocate for parents - A national information source for families with special needs children providing assistance to parents in sorting out private medical insurance authorization or reimbursement problems. The goal of SNAP is to provide information, education, advocacy and referrals to families with special needs for children of all ages and disabilities. Phone: 1-888-310-9889 or visit their website at www.snapinfo.org 

Prescription Drug Assistance Programs:

The following websites may offer help in getting prescription drug costs covered: www.needymeds.com , www.rxassist.org , www.phrma.org . In addition, Pharmaceutical Research and Manufactures of America offers a new interactive drug site that provides a one-stop link to more than 1400 medicines. Patients can fill out an online form and receive a list of programs for which they may qualify. www.helpingpatients.org 

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Information - Disabilities
The Family Village
The Arc of the United States
National Information Center for Children and Youth with Disabilities
United Cerebral Palsy Association
National Organization for Rare Disorders, Inc.
Americans with Disabilities Act
Search the Disabilities Dictionary
 
  Internet Health Directory

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Advocacy - Federal Level
United Cerebral Palsy Association
The Arc of the United States (Government Report & Capitol Insider)
Bazelon Center of Mental Health Law
Wrightslaw Advocacy and Law Libraries
U.S. govenment disabitiy site
  Center for the Study and Advancement of Disability Policy (CSADP)

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Education
Council for Exceptional Children
    eNewsletter sign-up
  Wrights Law
  National Dissemination Center for Children with Disabilities
Special Education Resources
Federal Resource Center for Special Education
ABA Materials- Early Learning Site

Respite, Camps and Other Services

    Click here

Link Policy
PWSA-USA from time to time provides links to websites maintained by third parties, over which PWSA-USA has no control. PWSA-USA does not endorse the content, operators, products or services of such sites, and PWSA-USA is not responsible or liable for the content, operators, availability, accuracy, quality, advertising, products, services or other materials on or available from such sites. PWSA-USA shall not be responsible or liable, directly or indirectly, for any damage or loss caused or alleged to be caused by or in connection with use of or reliance on any such content, products or services available on or through such sites.

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Edited: 12/12/2007