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Save the date! Our 11th international conference will be held from 6th to 10th July 2022 at the University of Limerick, Ireland.
Find out more...
10th International PWS Conference
The local hosts for the event were the Cuban Society of Human Genetics (SOCUGEN).
Havana, 13-17 November, 2019

This was IPWSO's 10th international Prader-Willi syndrome conference. We hold these meetings every 3 years, each time in a different country. The conference was divided into four streams: Clinical and Scientific, Parent and Family, Professional Providers and Caregivers, and Activities for People with PWS. This time, significantly, our conference was held in Havana, Cuba. Cuba has been an important part of IPWSO's large 'family' of 105 members and the progress made by a few families and dedicated professionals is fantastic.

We were joined by 500 delegates from 43 countries worldwide, including 200 people from Cuba.

Highlights for us included a really strong Scientific programme, a huge interest in the Caregivers' programme (we needed a bigger room!) and the enthusiasm and interest of the Cuban families.

Click here for the conference booklet.

Our President Tony Holland, was interviewed by the BBC along with Loisel Bello, one of our key Cuban organisers and some of the Cuban families. The story was broadcast on 26th December 2019.

The Latin American group of specialists

This conference was our first to be held in the Spanish speaking world and our Board member Amalia Balart brought together the Latin American delegates for a really productive and exciting meeting on the Friday of the conference. We hope this group will continue to flourish.

Looking forward to 2022!

The conference ended in the traditional way with our General Assembly and the vote to choose our next conference location. We were delighted to receive strong bids from India, Ireland, Malaysia and Thailand. Ireland was voted in first place and we are already working with their team to plan for July 2022.

Celebrating the IPWSO travel scholars!

Thanks to funding from the Friends of IPWSO (USA) we were able to offer financial assistance to 11 delegates to attend the Cuba conference. Many people applied for this funding and we were sorry not to be able to support more of them. The delegates came from countries around the world including Georgia, Mexico, Bulgaria and India and also came from diverse backgrounds including professionals and families.


Read their reports here.

Amongst the travel scholars was Esther Maina PhD who travelled to Cuba from Kenya (Esther is pictured here with Tony). Esther has been concerned about the lack of PWS diagnosis in the East African region and has been working with paediatricians in Kenya to find out more about the true reality for children with PWS in the area. Esther told us,

"Attending the 10th IPWSO conference was most enriching for me personally and as a scientist... The sessions enabled me to foster discussion and strengthen connections between myself and my proposed research work and the other participants, with the aim of establishing a support group for the parents and care givers back in Kenya."

If you are able to donate to IPWSO to enable more travel scholarships to future conferences do let us know.

Depending on availability of funds, IPWSO offers scholarships to attend our conferences.  Contact us to  keep up to date with conferences, workshops, meetings, and scholarship grants.

Scholars for 2019 can be seen here

Scholars for 2018 can be seen here.  

Has your Association or Organisation thought about hosting an IPWSO conference?  Over the years these have been hosted in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada and most recently Cuba.  Ireland will host in 2022 but maybe your Association would like to start thinking about 2025!

Find out more about our 11th international conference to be held from 6 - 10 July 2022 at the University of Limerick, Ireland.

Not found what you're looking for?

Get in touch and let us know how we can help you with any enquiry about Prader-Willi syndrome and how our organisation works.

Find out more about our 9th international conference, held from 20 - 24 July 2016 in Toronto, Canada, hosted by FPWR Canada.

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Keep up to date with the latest news, stories and research from the PWS community.


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