IPWSO Delegates
Each registered PWS Association appoints Parent and Professional Delegates to be their representatives. When applicable, a Caregiver Delegate is also appointed.
What is the role of IPWSO delegates?
Parent Delegates are the point of contact that IPWSO uses when distributing information, sending emails or requests for action. It is the Parent Delegate’s responsibility to action requests from IPWSO, making sure these reach their country’s PWS Association. IPWSO does not subsidise or pay for any travel, but if circumstances allow for a travel grant, any Delegate is able to apply. (Grants are well advertised beforehand.)
Professional Delegates are the point of contact that IPWSO – and IPWSO’s Clinical and Scientific Advisory Board – uses when distributing scientific information, or requesting help or advice for a patient in that country, or referring contacts. Professional Delegates do not have voting rights, but may hold their country’s Proxy vote and may attend General Assemblies. Professional Delegates are appointed by their country’s PWS Association.
Caregiver Delegates are the point of contact that IPWSO’s Professional Provider Caregiver Board uses to distribute information about residential support. Caregiver Delegates are appointed by their country’s PWS Association. They do not have the right to vote, but may carry their country’s Proxy vote and attend General Assemblies.
Parent delegates to IPWSO are appointed by their PWS Association to represent them especially at IPWSO’s General Assemblies, held every three years, and to vote on that Association’s behalf. Any voting required must be fully approved by that Association beforehand and agreed upon in consultation with the Professional Delegate. It is expected that one parent delegate will be present at the General Assembly, or that the Association in question will have sent a Proxy vote beforehand.
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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.