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Prader-Willi Syndrome Association (USA)

Last Update:4/4/2017
Contact:
Title:
Address:8588 Potter Park Drive
Suite 500
Sarasota, FL 34238
County:Out of state
Phone:941-312-0400
Toll Free:800-926-4797
Fax:941-312-0142
TDY:
E-Mail:
Website:www.pwsausa.org
Mission

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
 

Program Description

In addition to Research, PWSA (USA) provides the following Family Support Services:

  • A Package of Hope, opportunity to work with a parent mentor and 1 year free membership to parents with children who are newly diagnosed.
  • An extensive medical collection of information on our website and publications that families, as well as professionals and supported living providers can access.
  • Advocacy for medical support, growth hormone approval, school issues, and placement.
  • Assistance to parents and educators with IEP’s, ISP’s and educational material for all involved with a child or adult who has PWS.
  • Interaction with medical and other professionals to try to prevent and if necessary handle urgent and/or crisis cases in a timely and effective manner
Financial
Services
Genetic Disorders
Information / Website Only
On-line Community/Listserv/Social Media
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.