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    USA-UK-EUROPE

    Educational Collaborative to Advance Endocrine Care

    for Adults with Prader-Willi Syndrome

    This Educational Collaborative to Advance Endocrine Care for Adults with PWS is an educational collaborative focused on sharing expertise and encouraging dialogue among providers in the USA, UK, and Europe who are caring for adults with PWS.

    Why do we need the collaborative?


    • Limited adult endocrinologists in US/UK/Europe with expertise in managing patients with PWS
    • Our pediatric PWS population is aging and will need adult care
    • Limited mentorship for incoming generations of endocrinologists to take care of adults with PWS
    A smiling young woman wearing glasses and a bright pink shirt sits on a gray couch, holding a bouquet of pink, purple, and white flowers tied with a pink ribbon.

    Adult Endocrine Educational Collaborative Objectives:

    • To facilitate scholarly exchange regarding the clinical management of aging patients with PWS through case-based discussions.
    • To cultivate interest and expertise among endocrinologists caring for adults, thereby fostering the development and training of future specialists dedicated to the care of adults with PWS.
    • To create a collaborative community of professionals to address complex clinical questions and share best practices.

    Collaborative Structure

    • Monthly virtual meetings held for one hour during the third week of each month, alternating between Tuesdays and Thursdays of the third week
    • Sessions will focus on the discussion of one to two clinical case studies involving adults with PWS (aged 18 years and older)
    • Case presentations will primarily be led by junior providers seeking to expand their expertise in adult PWS care; however, senior endocrinologists are also welcome to present cases

    Topics from Previous Collaborative Meetings

    • Challenges in those who did not receive appropriate PWS-specific pediatric care
    • Capacity assessments in high-functioning adults
    • Care gaps and transitions of care
    • Adrenal insufficiency
    • Osteoporosis management
    • Dementia/aging assessment in older PWS adults
    • GLP1Ra and GLP1Ra/GIP (tirzepatide) experience in those with PWS
    • Growth hormone and sex steroid use in PWS adults, including managing thrombosis risk
    • Testosterone and behavior concerns from parents
    • Unexplained weight loss

    How To Join

    For information on how to join this collaborative, please email caroline@fpwr.org