Professional Providers Conference 2025
United in Hope: 2025 PWS Conference
Presentations from the Professional Providers Programme
Held on 25 & 26 June 2025, the Professional Providers Conference brought together global experts for two engaging days of oral presentations and poster sessions dedicated to advancing care for individuals with PWS.
Centered on the theme “Sharing the Care,” the event highlighted the essential contributions of professional providers in supporting families, clinical teams, and interdisciplinary services. The focus was on promoting a whole-person approach that enables individuals with PWS to thrive in residential and community care settings.
Participants, from full-time caregivers to occasional support staff and representatives of national PWS associations, took part in meaningful discussions and collaborative knowledge-sharing throughout the conference.
For those who were unable to attend in person, we’re delighted to share some of the presentations below.
People with Prader-Willi syndrome in Bavaria send their best wishes for United in Hope 2025
Featured members of the People with PWS Committee group based in Bavaria send their wishes, thoughts and advice for the upcoming United in Hope: 2025 PWS International Conference in Phoenix, Arizona, (June 2025).
Zhejiang Prader-Willi Syndrome Rare Disease Care Center, China
Lin Xiaojing’s presentation, Focus on Prader-Willi Syndrome, Light Up the Beacon of Hope. PDF available here (not animated).
A New Resource: ‘Practical Portions for Prader-Willi Syndrome’
Evelien Gevers, MD, PhD, FRCPCH, Consultant Paediatrician in Endocrinology and Diabetes, Barts Health Trust, Royal London Hospital, Dept of Paediatric Endocrinology and Diabetes, UK. Download the PDF here.
Poster: Transition to Adulthood for Patients with Prader-Willi Syndrome (PWS)
Authors: W. Corrie Andrews, MS, LPC; Criselda Hinojosa, LMSW & Sani Roy, MD View PDF
Poster: A resource for practical food portions for children and adults with Prader-Willi Syndrome
Authors: C Smith, L Singh, J Sanderson, J Lodge, P Wallach, J Henderson, EF Gevers View PDF
Poster: Transition to Adulthood for Patients with Prader-Willi Syndrome (PWS)
Authors: Kimberly Herivel & Natasha Tmusic View PDF
Poster: Implementing a Staffing Position to Address PWS Caregiver Shortages
Author: Claire Poor-Harmon View PDF
The Development of a PWS Specific Respite Service
Lynsey Moorehouse, RNID, BNS, Regional PWS Operations Manager, Resilience Healthcare, Ireland. Download the PDF here. View the video from slide 3 here.
Musculoskeletal Issues of Prader-Willi Syndrome: A Few Things to Know
Harold van Boss, MD, Pediatric Orthopaedic Surgeon, USA. Download the PDF here.
Caregivers’ Forum
Shelly Cordner, Project Manager, IPWSO, UK and Lynsey Moorehouse, RNID, BNS, Regional PWS Operations Manager, Resilience Healthcare, Ireland. Download the PDF here. Read the summary notes of the Forum discussion here.
Register for the Caregivers’ Forum here.
A Simple and Humane Approach to Minimizing Behavioral Outbursts for People Living with PWS: What to Do and Why
Mark Lister, B.S., BCaBA, Behavior Analyst, The Arc of Alachua County, USA. Download the PDF here.
Article: Prader-Willi syndrome
Understanding and support at school
Article submitted to contribute to knowledge sharing at the conference by Dr. Norbert Hödebeck-Stuntebeck; Dipl.-Psych, Germany. Download the PDF here.
Workshop summaries:
Patrice Carroll, LICSW, Director of PWS Services, Latham
Centers, USA, Brittni Kliment, Executive Vice President, Latham Centers, USA
1. Supporting People with PWS with Very Challenging Behavior. Summary here. See also IPWSO Mental Health Report which was presented by Tony Holland.
2. Effective Communication with People with PWS. Summary here.
3. Friends, Partnerships, and Sexuality. Summary here.
Aging in PWS
Lynn Garrick, MSN, RN, Medical/Research Coordinator, PWSA | USA, Mary K. Ziccardi, Regional Director, Sevita Health, USA and Kendra King-Blischke, Assistant Director of Adult Residential Living, Latham Centers, USA. Download the PDF here.
The Experience of Grief for Residents and Staff in a PWS Residential Setting
Barbara J. (BJ) Goff, Ed.D, Professor Emeritus of Special Education, Westfield State University, USA, and Larry Genstil, PhD, Psychologist, Prader-Willi Specialist, Sha’are Zedek Medical Center, Israel. Download the PDF here.
See also: Presentation on Mourning here.
Caregivers Working with the Family of the Person with PWS
Lynn Garrick, MSN, RN, Medical/Research Coordinator, PWSA | USA, and Brian Hughes, Professor of Psychology, University of Galway, Ireland. Download the PDF here.
Promoting and Fostering Self-Advocacy
Gary Brennan, National Development Manager, The Prader-Willi Syndrome Association, Ireland, and Georgina Loughnan, Physiotherapist, PWS Clinic Coordinator, Metabolism & Obesity Service PWS Clinic Royal Prince Alfred Hospital Sydney, Australia. Download the PDF here.
See also: Guidance on PWS-inclusive meetings.
Click to watch videos from the presentation: Ken | James | David
Scholarships
Depending on availability of funds, IPWSO offers scholarships to attend our conferences. Contact us to keep up to date with conferences, workshops, meetings, and scholarship grants.
Future conferences
Has your Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be returning to the USA.
If your association is interested in hosting a future conference do get in touch.
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IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
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What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
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