Caregivers’ Forum
A place for professional PWS caregivers worldwide to share practice-driven knowledge, information and support.
Next meeting: Thursday, 22 January 2026, 1pm London, UK time
Topic: Ageing in PWS
Meetings are held online on Zoom and last for 90 minutes.
Click here to see your local time for the meeting.
Click the RSVP button to let us know you plan on attending and add the meeting to your calendar.
Individuals with PWS experiences unique physical, cognitive, and behavioral changes as they grow older. Ageing in PWS can exacerbate challenges such as reduced mobility, increased risk of obesity-related health problems, osteoporosis, sleep disturbances, and hormonal deficiencies. Cognitive decline or changes in executive function may impact daily living skills and independence, while behavioural issues like rigidity, anxiety, or compulsivity can become more pronounced.
Being aware of these age-related changes enables care providers to anticipate needs, tailor interventions, maintain quality of life, promote safe environments, and provide holistic support that addresses both physical and mental health. Early recognition and proactive management are key to preventing complications and ensuring that ageing adults with PWS remain as healthy and engaged as possible.
Our speaker: 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.
Susanne will present key medical insights, including practical recommendations, important health considerations, and the challenges around ageing with PWS that have been raised by caregivers. She will also highlight how experiences vary greatly among people with PWS – diagnosis timing, obesity history, medical complications, hormone treatment, social support, education, and family circumstances – and why understanding each person’s life history is essential.
Participants should come prepared to share their own experiences, questions, and concerns. Caregivers are experts through lived experience, and this session is an opportunity to exchange knowledge, learn from one another, and deepen our collective understanding.
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 Diagnosis
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 testing.
Find support in my country
We have contacts in many countries and regions around the world.