Ep7 Edition 106: PWSA | USA Pulse

(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)

africke@pwsausa.org

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