Caregivers’ Forum
A place for professional PWS caregivers worldwide to share practice-driven knowledge, information and support.
Next meeting: Thursday, 24 September 2026, 1pm London, UK time
Topic: Medical and physical health needs of residents with PWS
Meetings are held online on Zoom and last for 90 minutes.
Click here to see your local time for the meeting.
Join us for a focused discussion on the medical and physical health needs of individuals with PWS living in residential care. This session will consider how these needs present in a 24-hour care environment and how they can be managed safely and consistently in day-to-day practice.
Your Questions, Your Priorities, Your Forum
The Caregivers’ Forum is shaped by its members, and we want this session to reflect the topics that matter most to you. When you register, you’ll have the opportunity to tell us which physical health topic you would most like discussed and submit any questions in advance.
Your feedback will help guide the conversation, ensuring we focus on the issues that are most relevant to caregivers and families supporting people with PWS. Rather than a traditional presentation, this session will be interactive and informed by the interests, experiences and questions of those attending.
We encourage you to RSVP and share your questions so that we can make the discussion as useful, practical and engaging as possible.
This meeting is aimed at residential care teams, including support workers, nurses, team leaders, service managers, and allied health professionals involved in the day-to-day support of people with PWS. It provides an opportunity to share experiences, ask questions, and reflect on practice in order to strengthen approaches that support both quality of life and safety.
About our speakers
Susanne Blichfeldt, MD, The Danish Prader-Willi Association, IPWSO Clinical and Scientific Advisory Board (CSAB), Denmark
Susanne is a paediatrician with many years’ experience of diagnoses, clinical treatment, education and advising families and professionals about PWS in Denmark and abroad. She has undertaken research about growth hormone treatment in PWS and has published widely. Susanne is co- founder of the PWS Danish Association (1986), and leader of the Advisory Board in the Association. She has been involved with IPWSO since 1991 and has been a member of the IPWSO Clinical and Scientific Advisory Board since 2004 and is a member of the IPWSO Famcare Board. She is a former member of the IPWSO Trustee Board and the Professional Providers and Caregivers Board. Susanne is married with children and grandchildren and has a son, 46 years-old, living with PWS.
As a member of IPWSO’s Clinical and Scientific Advisory Board (CSAB), Susanne leads IPWSO’s Ask a Professional advice service, through which she provides expert advice and support to families, caregivers and professionals worldwide on a wide range of PWS-related topics.
Lynn Garrick, Chair of the IPWSO Professional Providers and Caregivers Board, Program Director, AME Community Services, USA
Lynn is the mother of five children, the youngest was diagnosed with PWS as an infant. She is a registered nurse and works as a program director for AME Community Services which is a residential provider for those living with PWS. In addition to her professional involvement with AME Community Services Inc., she has been a board member of the Minnesota Prader-Willi Syndrome Association for many years and serves as the medical and research coordinator for PWSA | USA.
About the Forum
The Caregivers’ Forum is a virtual space for professional PWS caregivers worldwide to connect and collaborate. Anyone in a paid role caring for people with PWS, or anyone working to establish PWS residential services where none exist, is welcome to be a part of the Forum.
The Forum is supported by the Professional Providers and Caregivers Board (PPCB) of IPWSO, which is an advisory board dedicated to sharing best practice, information, knowledge and techniques to those providing care to the global PWS community, in order that those living with PWS may live their lives to the highest quality.
IPWSO supports this caregiver community by facilitating:
- 3 Caregivers’ Forum meetings annually
- 3 Forum newsletters following meetings
- A webpage for the Forum which includes latest news and shared resources
- Ad-hoc support for networking in your own country
Topics covered will be suggested by Forum members and are likely to include important information on themes such as Ageing, Challenging Behaviour, Day to Day Care, Medical Care, Relationships and Sexuality, Research, Rights and Restrictions, Social Skills and much more.
Join the Forum!
Fill in the short form below to become a Forum Member today. Forum Members receive information on how to join upcoming meetings and 3 annual Forum newsletters. You can help us spread the word by downloading and sharing our information booklet with colleagues.
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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International Community
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.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
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.
Free Genetic Screening
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free genetic screening.
Find support in my country
We have contacts in many countries and regions around the world.