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For Parent/Family

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Education

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For Providers

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Medical

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

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Advocacy - Federal Level

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Helpful Products and Instructions

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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: 02/11/2013

  

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