Ep7 Edition 106: PWSA | USA Pulse
Listen now
Description
(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.) We're bringing the newest edition of our Pulse newsletter, this time with some conversation and personal insight. Catch up on the latest news in the PWS community by listening to this edition of the PWS United podcast. LINKS Join PWS Connect on Discord TREND Connect Community and Research Initiative (google.com) The Importance of Newborn Screening - Prader-Willi Syndrome Association | USA (pwsausa.org) Share Your Story - Prader-Willi Syndrome Association | USA (pwsausa.org) 2025 United in Hope Conference - Prader-Willi Syndrome Association | USA (pwsausa.org) PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA (pwsausa.org) 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA (pwsausa.org) Arizona Grand Resort & Spa - Reservations - Room Availability Search (synxis.com) Empowering Heroes: Residential Providers Conference - Prader-Willi Syndrome Association | USA (pwsausa.org) Gavin Gill Classic - Prader-Willi Syndrome Association | USA (pwsausa.org) Answers for Audrey - Prader-Willi Syndrome Association | USA (pwsausa.org) 2024 #RAREis Global Advocate Grant (rareiscommunity.com) FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS - Prader-Willi Syndrome Association | USA (pwsausa.org) Creating a Safe Home - Prader-Willi Syndrome Association | USA (pwsausa.org) Friendship and Beyond: Navigating relationships and sexuality in PWS with Patrice Carroll webinar registration Webinar Registration - Zoom Family Support Webinar: Creating an Individualized Health Plan (youtube.com) Grandparents Day 2024 - Prader-Willi Syndrome Association | USA (pwsausa.org) Call for 2025 Conference Abstracts Conference 2025 - IPWSO ECHO Feeding and Swallowing Registration Meeting Registration - Zoom ECHO Psychiatry and PWS Registration Meeting Registration - Zoom ECHO Exercise Physiology Registration Meeting Registration - Zoom VNS4PWS Clinical Trial: What You Need to Know (youtube.com) Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA (pwsausa.org) PWS Clinics - Prader-Willi Syndrome Association | USA (pwsausa.org) Clinical Trials - Prader-Willi Syndrome Association | USA (pwsausa.org) [email protected]
More Episodes
Published 11/19/24
The latest in PWSA events and PWS news in research, family support, and advocacy. Get a brief introduction to International 15Q Day and how you can help support PWSA | USA for our 2024 Angel Drive fundraiser. Other topics include the 2025 International PWS conference and FPWRs travel scholarship,...
Published 11/19/24
PWSA | USA's communication team, Carrie and Anne, speak with PWS mom, Emily Felt, about self-care for caregivers. We talk about what caregiver burnout may look like, various ways to practice meditative activities and why, the importance of self-advocacy and external support, what gratitude does...
Published 11/12/24