Caregivers’ Forum
A place for professional PWS caregivers worldwide to share practice-driven knowledge, information and support.
Next meeting: Thursday, 23 January 2025,
Grief in a PWS Residential Setting
7pm London, UK time
Meetings are held online on Zoom and last for 90 minutes. We recommend using a service such as timeanddate.com to check the time in your region.
Experiences of grief among residents and caregivers in a PWS-specific residential setting are intimate, intricate and multifaceted. As a community, caregivers have expressed to us the desire for open space to discuss this topic in-depth. Join us to hear short talks on experiences of grief, to ask questions, and to share your advice on how to support people with PWS and staff through periods of mourning and significant change.
The Caregivers’ Forum is a virtual space for professional PWS caregivers worldwide to connect and collaborate. Anyone working in a paid role caring for people with PWS 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.
Thank you to Latham Centers for supporting the Caregivers’ Forum.
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.