What's new

20 March 2020

Coronavirus Erkrankung 2019 (COVID-19) Erklärung an die Mitglieder (last updated 26 March).


19 March 2020

Share your experiences with us about COVID-19 and PWS, see our blog and contact us.


18 March 2020

Pautas para manejo preventivo Coronavirus.

Le Centre de Référence du SPW et Prader Willi France: Informations du centre de référence sur le coronavirus​


17 March 2020

IPWSO statement on COVID-19

IPWSO is grateful to the PWSA (USA) for permission to adapt, for an international audience, the statement on COVID-19 that PWSA (USA) had previously prepared. The Chair of the IPWSO Clinical and Scientific Advisory Committee has agreed this adapted statement. If important new information becomes available we will change or add to this statement (last updated 26 March).



17 March 2020

IPWSO is recruiting!

We are looking for a talented and committed Website and Conference Manager. This is a part-time, one year contract, home-based in the UK. For more details and how to apply see our advert. The deadline is 5th April 2020.


March 2020

IPWSO appoints Marguerite Hughes as Chief Executive Officer

The International Prader-Willi Syndrome Organisation is proud to announce the appointment of Marguerite Hughes as our new Chief Executive Officer.


Marguerite is based in Ireland and has a doctorate in Social Science from University College Cork.  Marguerite has held senior voluntary and paid positions in non-profit organisations in sectors including international development, patient support and advocacy, homelessness, and educational advocacy for 20 years.  Marguerite's first child was born in 2004 and diagnosed with PWS shortly after birth.   Prior to becoming IPWSO CEO, Marguerite served on the IPWSO board for 6 years, most recently as IPWSO Vice President from 2016-2019.

IPWSO President, Professor Tony Holland said, “The appointment of Marguerite Hughes as CEO of IPWSO marks an exciting new phase in IPWSO's work and the Board of Trustees look forward working with her in supporting people with Prader-Willi syndrome and their families around the world.”

January 2020

Application form for IPWSO 2020 Conference Fund sponsored by Soleno Therapeutics and Friends of IPWSO (USA), a non-profit organisation


In order to share knowledge about Prader-Willi Syndrome (PWS) around the world IPWSO is offering grants to individuals or organisations who wish to organise local, national or regional Prader-Willi syndrome workshops, meetings, or conferences.  This scheme is sponsored by Soleno Therapeutics and Friends of IPWSO (USA), a non-profit organisation.

The closing date for the receipt of applications is 29 February 2020. The successful applicant/s will be chosen by the IPWSO board whose decision will be final.  Both successful and unsuccessful applicants will be informed by 15 April 2019.


To apply, please submit a completed application form by email to office@ipwso.org

IPWSO, Douglas House, 18b Trumpington Road,

Cambridge CB2 8AH, UK

Registered as a charity in England & Wales, charity no. 1182873

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