What's new

6 April 2020

Millendo Therapeutics have announced the findings from their phase 2b trial of livoletide to treat hyperphagia in people with PWS. Sadly there was no difference between those on treatment and those on placebo. IPWSO would like to thank Millendo for their work and for their commitment to people with PWS during the course of the trial. Livoletide is an unacylated ghrelin analogue and one possible approach to treatment, other studies are on-going that focus on different pathways. These trials are essential to ensure that potential treatments are thoroughly evaluated and the medications used are safe. People with PWS, their families and support staff have all contributed to this and to other trials. By all of us working together treatments will be found. 

27 March 2020

Navigating rare neurological diseases: meeting the challenge for policy makers, patients and healthcare professionalsReport from the Economist Intelligence Unit

Prader-Willi Syndrome (PWS) is one of an estimated 7,000 rare conditions defined in Europe and Canada as any condition affecting less than 5 in 10,000 people and in the USA as any condition affecting less than 6.40 per 10,000 people. Rare conditions described as 'neurological', because the brain is involved, are rarer still. PWS is one such neurological condition. The link above will take you to a report that specifically focuses on rare neurological conditions and PWS is included in the review. 

In preparing the report the author approached IPWSO and Tony Holland, in his capacity as President of IPWSO, and Dr Maithé Tauber, a French endocrinologist and international expert on PWS and a member of the IPWSO Clinical and Scientific Advisory Board were interviewed. Maithé was able to describe how services have developed in France, an example of a Country with a well-developed services for people with PWS.  

One of IPWSO's roles is to help support and inform the development of services for people with PWS and their families in countries where services are limited or non-existent. These reports can be helpful when you are trying to encourage you Government to develop or improve services. We encourage you to read this report and to ask yourself how the findings in the report may be used in your country. 

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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