Business Description
Prader‐Willi Syndrome Association | USA was established in 1975 to unite parents, professionals, and other interested citizens to enhance the quality of life for those affected by Prader‐Willi syndrome (PWS). The organization plays a crucial role in the PWS community by providing a platform for shared experiences, advancing research, promoting education, advocating for patient rights, and offering comprehensive support to individuals with the syndrome and their families.
With chapters across most states, PWSA | USA stands as the only national PWS supporith Prader-Willi syndrome t organization dedicated exclusively to assisting individuals w and their families at every stage of their journey.
Mission and Vision
Mission:
To empower the Prader-Willi syndrome community through shared experiences, research, education, advocacy, and support.
Vision:
To enhance the quality of life of those affected by Prader-Willi syndrome and ensure they receive the necessary support and resources.
Services and Programs
Support Services:
Emotional and informational support for families and individuals.
Assistance with accessing healthcare and educational resources.
Crisis intervention and management.
Education and Awareness:
Educational resources for families, professionals, and the general public.
Workshops, webinars, and conferences on PWS.
Advocacy:
Advocacy for policies and legislation that benefit individuals with PWS.
Collaboration with other organizations and stakeholders to promote awareness and research funding.
Research:
Funding and supporting research initiatives aimed at understanding PWS.
Promoting and disseminating research findings to the community.
Community Building:
Facilitating connections among families, caregivers, and individuals with PWS.
Organizing community events and support groups.
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