Prader-Willi Syndrome

The PES PWS SIG will help all PES members to improve their clinical care of patients with PWS through increased education, collaboration and resource development. This will include efforts focused on clinical research, optimization of standards of care, and education for patients, families, and providers. The PES PWS SIG aims promote partnerships and collaboration between multidisciplinary clinical teams, individual experts, and general providers.

Proposed activities for the next two or three years: PWS is a complex but rare disease.  Care has traditionally been siloed in such a way that in many areas of the country there is no available medical home for comprehensive care.  Initial activities will be focused on:

1. Increase awareness and education about care for individuals with PWS to target early diagnosis and intervention through workshops and focus areas at the annual meeting, webinars and a quarterly case series “Coffee Hour,” and expansion of mentorship from senior PWS clinicians and researchers for trainees and junior faculty

2. Creation of an evidence-based Clinical Practice/Health Supervision Guideline for children and adolescents with PWS.  This would be similar to that available for Turner syndrome and Down syndrome, with participation and endorsement from other national and internation medical associations and societies.

3. Collaboration with the Foundation for Prader-Willi Research (FPWR) PWS CLIC to further a multi-disciplinary multi-institution registry currently underway to improve registry participation and formulate studies to evaluate high priority research topics that will improve clinical care.