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 and Associate Member Countries have professional and/or parent contacts who are working with people with PWS.
In order to contact the local representative or delegate of any member countries or associations, see our Country Members page.
Why join IPWSO?
Together we have a strong, global voice to call for better care, support and awareness of PWS.
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.
Together we can support people in countries where there is no association and where knowledge and access to care may be very limited.
Together we can make the global PWS community aware of the many free services, including diagnostic testing, offered by IPWSO.
Together we are IPWSO. Have a say in how IPWSO is run at our General Assembly and get more involved in our events.
All fully subscribed country members with their own constituted PWS Association pay an annual subscription fee based on the number of families in their membership. The subscription year runs from 1 January to 31 December.
How do you become a member of IPWSO? Click here
Country Associations with less than 50 members EUR 50
Country Associations with 50-99 members EUR 100
Country Associations with 100-299 members EUR 200
Country Associations with 300-499 members EUR 500
Country Associations with 500+ members EUR 1,000
All subscribed country members have voting rights at the General Assembly which is held every three years in conjunction with the IPWSO International Conference.
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 PW Association of that country.
Each country's registered PWS Association appoints Parent and Professional Delegates to be their representatives. When applicable, a Caregiver Delegate is also appointed.
> About us
Get in touch and let us know how we can help you with any enquiry about Prader-Willi syndrome and how our organisation works.