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Membership

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. Please see our Constitution for further details.

Member countries are subscribed members with voting rights. To be eligible to join as a member you must have a constitution and be formally registered in your country. Associate Member Countries have professional and/or parent contacts who are working with people with PWS but no formal association. In order to contact the local representative or delegate of any member or associate country, see our Country Members page.

 

Why join IPWSO?
Global Voice

Together we have a strong, global voice to call for better care, support and awareness of PWS.

Support Network

Together we can support each other. Our network of members ranges from old, well established organisations to brand new ones! We can support and guide your development as an association and give you access to our expert networks.

Outreach

Together we can support people in countries where there is no association and where knowledge and access to care may be very limited.

Community

Together we can make the global PWS community aware of the many free services, including diagnostic testing, offered by IPWSO.

One Organisation

Together we are IPWSO. Have a say in how IPWSO is run at our General Assembly and get more involved in our events.

Membership fees

€50

Country Associations with less than 50 members

€100

Country Associations with  50-99 members 

€200

Country Associations with 100 – 299 members

€500

Country Associations with 300 – 499 members

€1,000

Country Associations with 500+ members

Associate Membership

Countries where there is no constituted PWS Association, but where there is either (or both) a Professional Delegate, or Parent Delegate may claim Associate Membership.  This entitles these delegates to receive all information, support, and educational knowledge from IPWSO via our Newsflash, social media, or direct access to IPWSO and its boards for help and support. Associate Membership does not entitle voting at the General Assembly.

Associate Membership of secondary PWS Associations

Where there is another PWS Association or organisation in a country, this association or organisation can apply for IPWSO Associate Membership and receive the same benefits and access to IPWSO as ordinary Associate Membership (above).  There is also an entitlement for a Parent Delegate, a Professional Delegate, and a Caregiver Delegate as representatives of the Association.  However, there is no entitlement for voting at the General Assembly as any voting decision must be made in conjunction with the primary PWS Association of that country.

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Country Members

Member countries are subscribed members with voting rights.
Click the link below for a full list of our current members and to find out more.

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IPWSO Delegates

Each country’s registered PWS Association appoints Parent and Professional Delegates to be their representatives. When applicable, a Caregiver Delegate is also appointed.

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.

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Information for
Families

Find useful guides, research and information to help families manage PWS.

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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?

Translated Guides

Find support in my country