Prader-Willi Syndrome Association (PWSA)

24-Hour Crisis LineService

A phone line staffed day and night for families facing a medical or behavior emergency tied to PWS. Staff listen and help. You can also email the team.

Advocacy and AwarenessProgram

PWSA | USA speaks up for people with PWS with state and federal leaders. It gives families toolkits, letter templates and a tool to find their elected officials, plus Medicaid information.

Building Our Social Skills (BOSS) CurriculumProgram

A social skills group on Zoom for teens and adults with PWS, built at Vanderbilt University. You apply first. All sessions are required, and people must be able to speak without help.

Family Mentor ProgramProgram

Experienced PWS family members are matched with families of children who were just diagnosed. Mentors listen and share what they have lived through. The program helps families make their own choices.

Georgia state chapter (Georgia Association for Prader-Willi Syndrome)Service

A volunteer-run state chapter that offers information, education, advocacy and a private Facebook group for Georgia caregivers.

Grief SupportService

A grief counselor gives counseling and emotional support to people with PWS and to family members. It covers loss of a loved one and other kinds of grief tied to life with PWS.

Guidance and support for families affected by PWSService

A support team gives information and guidance to people with PWS, their families and caregivers. It supports families from the NICU through every stage of life.

New Diagnosis Package of HopeService

Families with a new PWS diagnosis can fill out a form to get a parent's guide to the syndrome.