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Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary

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Manage episode 480900591 series 3594946
Content provided by PWSA | USA. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by PWSA | USA or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.

24 Hour Crisis Line: 941-312-0400

PWS Awareness Month - Prader-Willi Syndrome Association | USA

United in Hope Conference

Home - 2025 United in Hope PWS Conference

High-Level 2025 Conference Schedule Family Conference

High-Level 2025 Conference Schedule Professional Providers

50th Anniversary

PWSA Memory: PWSA-Pulse-May-2021.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

Financial Security Webinar: Webinar Registration - Zoom

Fundraisers

United We Brunch - Campaign

The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Members Sought for the Drug Utilization Review Board

PWS Awareness Month Proclamation Toolkit

[email protected]

[email protected]

Family Support

Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA

Family Resource Program - Parents/Caregiver Focus Groups

Family Resource Program - Sibling Focus Groups

Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA

Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey

Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA

Announcements/Resource Spotlight

A Letter to Friends and Family - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/; License certificate #2242442

  continue reading

62 episodes

Artwork
iconShare
 
Manage episode 480900591 series 3594946
Content provided by PWSA | USA. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by PWSA | USA or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.

24 Hour Crisis Line: 941-312-0400

PWS Awareness Month - Prader-Willi Syndrome Association | USA

United in Hope Conference

Home - 2025 United in Hope PWS Conference

High-Level 2025 Conference Schedule Family Conference

High-Level 2025 Conference Schedule Professional Providers

50th Anniversary

PWSA Memory: PWSA-Pulse-May-2021.pdf

Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA

Events

Financial Security Webinar: Webinar Registration - Zoom

Fundraisers

United We Brunch - Campaign

The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association

PWSA Fundraising Pages - Campaign

Spotlight on Hope

Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA

Share Your Story - Prader-Willi Syndrome Association | USA

Advocacy

Members Sought for the Drug Utilization Review Board

PWS Awareness Month Proclamation Toolkit

[email protected]

[email protected]

Family Support

Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA

Family Resource Program - Parents/Caregiver Focus Groups

Family Resource Program - Sibling Focus Groups

Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA

Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA

Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA

Research

VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA

Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey

Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA

Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA

Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA

Announcements/Resource Spotlight

A Letter to Friends and Family - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/; License certificate #2242442

  continue reading

62 episodes

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