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.

Support

Newly Diagnosed

PWSA (USA) offers support for families after the initial diagnosis of Prader-Willi syndrome. Upon diagnosis of a young child, we offer the Package of Hope as well as other helpful information. Older individuals diagnosed with PWS will also receive information from our office. Please call 800-926-4797

National Support

Parent Mentoring
The Parent Mentoring Program provides local support for the newly-diagnosed family. PWSA (USA), working with state chapters and individual volunteers, offers encouragement and support for our families. To find out more about the parent mentoring program call 800-926-4797

Non-Medical Support and Crisis Intervention
The Crisis Intervention team of PWSA (USA) has designed this section to help you respond effectively to non-medical crisis situations. If your loved one is experiencing a medical crisis please call our medical crisis line at 800-926-4797.

A non-medical crisis situation can include a legal, behavioral, school, or placement crisis. It can also include having difficulty obtaining needed benefits such as Supplemental Security Income (SSI) or Medicaid.  To access this section of our website, click here.

Registration of people with Prader-Willi syndrome will help us all to understand the unique needs and support needed by professionals in many fields.  Please take time to register and/or keep your information up-to-date by clicking here.

Additional support:

State and Local Support

State chapters, affiliates and focus groups are located throughout the United States. Click here for a list of active organizations and State-wide eSupport Groups.

International Support

For access to our global family, the International Prader-Willi Syndrome Organisation (IPWSO) website where you will find support and information, go to go to www.ipwso.org. Currently IPWSO has 81 member and associate member countries, representing well over 25,000 families.  IPWSO is an organization without borders, open to people of all origins and cultures.


Links and Resources

 

Telephone (800) 926-4797

 


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