Links and Resources

For Parent/Family

• Pittsburgh Partnership with Drs. Janice Forster and Linda Gourash offer expert advice and services for PWS.  Click here for more information.
• Email Support Groups
  PWSA (USA) support email communication groups for providers and families [Click here]
• The Young Child with Prader-Willi Syndrome, Janice M. Agarwal, PT.  This handout was created for families at the NJ conference. - 11/2009
• COOLING TOWELS - to help on those hot days!
• Summer Camps
• Holiday Resources
  • Halloween - Trick or Treats
  • Holiday Survival Tips
• Policies
  • Least Restrictive Environment and the Right To Eat
• Laughter Through Tears
• Does a Child with Disabilities mean a Disabled Marriage?
• Support for Diet with Extended Family Members
• About.Com Special Needs Children 
• Online Disability Community    
• Family Café                                               
• The Family Village
• The Arc of the United States
• 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.
• Genetic Alliance
• Support Groups
• Sibling Support
• Yellow Pages for Kids with Disabilities -Your state Yellow Pages includes many resources - government programs, grassroots organizations, and parent support groups.

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Education

• School Portfolio
• Parent Resource - Nolan (PDF)

• Conferences and Events

• Food in the classroom is NEVER ok. (PDF)

• Snacks in the classroom (PDF)

• Homework...A Lesson in Frustration (PDF)

• School Diet Form (PDF)

• Behavior Manifestations (PDF)

• Positive Behavior Tips for Educators (PDF)

• Tips for success for children with PWS in a school setting
• Positive Behavior Tips for Educators

• Health Concerns and the Student w/ Prader-Willi Syndrome Information for School Staff (PDF)

• News Flash: IDEA Report Card

• New DVD for PWS School Education

• Sample letter to parents of classmates of a child with PWS

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

• Handout- School Information for Staff

• Wrightslaw Advocacy and Law Libraries

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For Providers

• Best Practices Guidelines for Standard of Care in PWS
• Adults With Prader-Willi Syndrome and Decisions Regarding Least Restrictive Environment and the Right To Eat
• Positional Asphyxia

• Parent Provider Relations

• Provider: Do and Don'ts

• Parent: Do and Don'ts
• Recommended Publication - See publication order form...[click here]
  • Supporting Adults with Prader-Willi Syndrome - Goff
  • Handouts in members only

• PWSA (USA) provider Directory
• State by State list of residential programs        
• The Arc USA    
• Supporting Adults in a Residential Setting - BJ Goff
• For those wanting to start a supportive living home
• Parent Provider Relations - BJ Goff
  • Provider: Do and Don'ts
  • Parent: Do and Don'ts

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Medical

• The Ultimate Medicare and Medicaid Resource Page
• HCCF 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
• AllRefer.com - Reference & Health
• Medicaid Reference Desk
• All Refer 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/
• Dr. Connolly's Top Doctors in the USA http://www.castleconnolly.com
• The National Underinsured Resource Directory is intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement.  http://www.patientadvocate.org/help4u.php

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 American Association for Intellectual and Developmental Disabilities (AAIDD—formerly AAMR)
• Different Types of Learning Disabilities
• Magic Foundation
• 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 - NORD
• Americans with Disabilities Act
• Search the Disabilities Dictionary
•  
• Internet Health Directory
• Complete Disability Resource Guide
• About Learning Disabilities

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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. Government Disability site
• Center for the Study and Advancement of Disability Policy (CSADP)

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Helpful Products and Instructions

• Locking the Cabinets and Refrigerator
• Lockitdown by Marinelock LLC - Refrigerator locks
• GoKeyless - Keyless lock that is activated by fingerprints
• Magnetic Kitchen Locks
• Double sided keyless entry door lock
• Westport Adult Folding Tricycle @ Amazon.com
• Medical Alert Bracelets
• MedicAlert® 24-Hour Emergency Response

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Other organizations

1. Ontario Prader-Willi Syndrome Association
2. ASOCIACIÓN MADRILEÑA PARA EL SÍNDROME DE PRADER-WILLI (Spain)
3. Prader-Willi Syndrome Association (UK)  
4. Prader-Willi Syndrome Croatian
5. Prader-Willi French Organization
6. PWS Association (NZ) Inc
7. Prader-Willi Syndrome Association of South Africa
8. PWSV Deutschland (Germany)
9. Canadian PWS Organization 
      President, Diane Rogers 
      Telephone: (902) 836-4452 
      Email: gdrogers@pei.sympatico.ca 
10. Asociación Nacional de Síndrome Prader-Willi (Chile)
11. Prader-Willi Syndrome Association of Queensland (Australia) Inc.
12. Prader-Willi Information and Support in Chinese

    1. http://www.pwsa.org.tw/web/index.php?option=com_content&task=view&id=35&Itemid=49

    2. http://www.pwsa.org.tw/web/index.php?option=com_content&task=view&id=49&Itemid=62

    3. http://www.tfrd.org.tw/aca/dmCont.php?kind_id=2&subKind_id=1&subsubKind_id=&sid=90 

13. Foundation for Prader-Willi Research
14. Foundation for Prader-Willi Research Canada

Please note that organizations listed under "other PWS organizations" are not directly affiliated in any way with Prader-Willi Syndrome Association (USA).   PWSA (USA) has been funding and fostering PWS-related research for over 25 years. PWSA (USA) supports an ambitious research portfolio and actively solicits donations dedicated to research. For information about PWSA (USA) funded research projects, please visit the research section of this website. For additional information regarding how to fundraise for the purpose of research for PWSA (USA), please contact Jodi O’Sullivan at comdev@pwsausa.org .

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Link Policy
PWSA (USA) from time to time provides links from this website to other websites. We provide these links solely as a convenience to users of our website and not as an endorsement of any linked site. The linked sites are not under our control, we do not monitor the content of any linked site, and you should not assume that the content of any linked site reflects the opinions or values of PWSA (USA).

PWSA (USA) does not endorse the content, operators, products or services of any linked site, 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 any linked site. Your use of any linked site shall be entirely at your own risk. 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 your use of or reliance on any content, products or services available on or through any linked site.

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Edited: 04/19/2012