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Findyourvoice, Prader-Willi Syndrome Association | USA

April Webinar Series to Provide Health Care Advocacy Tools, Resources for PWS Community

Join Experts for the Find Your Voice: Advocating for PWS Health Care Webinar Series

In April 2022, PWSA | USA will host the "Find Your Voice: Advocating for PWS Health Care" webinar series to provide helpful tools and resources on health care advocacy for our PWS community. Because there are very few health care professionals in our communities who have knowledge of the unique health issues of infants, children, and adults with PWS – especially in urgent and/or emergency situations – it falls to the parents and caregivers to be the primary educators and advocates on health issues and needs for people with PWS. Led by PWS healthcare professionals (some of whom are parents of children with PWS), our four-part webinar series provides strategies and resources to help you advocate in the prevention, diagnosis, and management of the many health concerns and behaviors experienced by those with PWS.

Find Your Voice Webinar Series Schedule:

Friday, April 1, 2022 | 2:30 p.m. EST

Speaker: Stacy Ward, MS, Director of Family Support, PWSA | USA
Topics: Health advocacy (strategies, tools, and resources), common urgent health topics (high pain threshold, respiratory concerns, temperature regulation problems)

WATCH THE RECORDING HERE

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Friday, April 8, 2022 | 2:30 p.m. EST

Speaker: Lynn Garrick, RN, Medical/Research Coordinator, PWSA | USA
Topics: Key advocacy points, common urgent health topics (GI problems, fragile bones, skin picking, food seeking, weight management)

WATCH THE RECORDING HERE

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Friday, April 22, 2022 | 2:30 p.m. EST

Speaker: Barb Dorn, RN, BSN
Topics: Concerns for the hospitalized person with PWS (ER information, anesthesia, post-op monitoring, medication sensitivity, food security)

WATCH RECORDING HERE

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Friday, April 29, 2022 | 2:30 p.m. EST

Speaker: Lauren Schwartz-Roth, PhD, Clinical Psychologist, FPWR
Topics: Mental health crisis, getting help (differentiating between typical PWS behaviors & a mental health diagnosis, identifying and treating serious mental health issues)

WATCH RECORDING HERE

 

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