Sign up to our newsletter

Contact Us

  1. Home
  2.  » 
  3. About Us
  4.  » Our Structure

Our Structure

IPWSO is a truly international and parent-led organisation with Board members and volunteers from around the world. Find out more about how we are run and the people involved in our work.

Who makes decisions?

The General Assembly

The central decision-making body of IPWSO is the General Assembly which meets every three years during the international conference and may meet more often for extraordinary meetings. The General Assembly is constituted of the representatives of the IPWSO country member associations and they vote on the membership of the Board of Trustees, any changes to the constitution and the location of the next international conference.

The Board of Trustees

The Board of Trustees is made up of a maximum of ten elected members and two co-opted members.  It holds monthly meetings which are also attended by the staff and chairs of the three expert Boards. The Trustees are responsible for the strategic direction of the organisation as well as its financial stability and adherence to the law.

Standing Committees and Project Committees

Reporting into the Board are various committees including the three expert Boards: the Clinical and Scientific Advisory Board, the Professional Providers and Caregivers Board and the Famcare Board, membership of these Boards can be viewed in the section on Our People. There are also a number of committees which report to the Board on particular projects and other aspects of the organisation’s work.

Honorary President and our Advisers

IPWSO also relies on the advice of its Honorary President, IPWSO Founder Jean Phillips-Martinsson and a further group of advisers who provide guidance based on their specialist knowledge.

Our Project Committees:

Fundraising and Finance Committee 

Marcello Schutzer (Chair)

Joan Gardner

Craig Moore

Marguerite Hughes

Nora McNairney

Public Policy and International Liaison Committee 

Maria Libura (Chair)

Tony Holland

Dorica Dan

Elizabeth Fistein

Conferences and Workshops Committee 

Lynn Garrick (Chair)

Georgina Loughnan

Susanne Blichfeldt

Norbert Hödebeck-Stuntebeck

Website and Publications Committee 

François Besnier (Chair)

Kate Woodcock 

Agnes Hoctor 

Project ECHO® Committee 

James O’Brien (Chair)

Nora McNairney

Shelly Cordner

Tony Holland

Conference 2022 (IPWSO team)

Nora McNairney (Chair)

Amalia Balart

Dan Driscoll

Lynn Garrick

Norbert Hödebeck-Stuntebeck

Marguerite Hughes

Tony Holland

Kate Woodcock

Gary Brennan (link with PWSAI team)

Our People

Many people make up the work of IPWSO and the vast majority of our work is completed by volunteers.

Share your story

Help us make a difference and raise awareness across the world in areas where there may be limited information and knowledge about PWS. 

< Back to Get Involved

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.

three adults and a child smiling

Information for
Families

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

One man one lady at conference

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