Counting down the days..!

Not long to go before the 10th IPWSO International Conference starts! We have been delighted by the response and by the number of countries that will be represented.

Please don’t forget to organise your visa and remember the system is different depending on whether you are travelling from the USA or from elsewhere in the world. You will also need health insurance.

One of the pleasures of any international conference is to learn more about the country where the conference is taking place and particularly its history and culture. In the case of Cuba, for people of my age, the relatively recent history is very real but it goes back much further.

Netflix are now showing a documentary ‘The Cuba Libre Story’ that really brings this to life taking you from the time that Christopher Colombus arrived in 1492 to the modern day. If you have the chance do watch it as it will help you understand modern Cuba and the present day struggles. See you at the Cojimar conference centre.

Final preparations…!

Life has been a bit frantic with the final preparations for our 10th International conference which is being held in partnership with the Cuban Human Genetics Society in the Cojimar Conference Centre just outside of Havana from the 13th to 17th November 2019.

For the different parts of the conference we have delegates registered from over 35 countries and registrations are still coming in (there is still time to register, do it today!). This will be a unique opportunity for clinicians, scientists, parents, caregivers, and people with PWS from around the world to meet and share ideas. There is no other conference that brings together people in such a powerful way and we know it is going to be extra special in Cuba.

You will see from the programmes that we have reviews and workshops and almost every topic relevant to the needs of people with PWS will be discussed at one or other of the individual conferences. This conference, held every three years, is also an opportunity to renew friendships and to recharge your batteries so that you can return to your own country with new ideas.

At the General Assembly held at 5.00pm on the final day (Sunday 17th November), a new Board of Trustees for IPWSO will be elected by our member organisations. The names of those proposed are on our website. This meeting is also an opportunity for present and future Board members to hear from you about what you would like us to do – how can IPWSO work to improve the lives of people with PWS across the world and create and maintain this ‘international PWS family’. We have ideas but we want your ideas also.

For those who have not registered it is not too late – Cuba is irresistible!



Photo by Arno Smit on Unsplash

Travelling to Cuba from the US and beyond

There has been much in the news about changing regulations from the American Government about who and under what circumstances USA citizens or citizens from other countries travelling through the USA to go Cuba are allowed to travel. Further information has been added to our website (on our travel page) which I hope will be helpful. We have been monitoring the situation closely. We, of course, cannot be certain what will happen in the months to come. However, the IPWSO Board has made the decision to continue with the plans.

This is an important conference that has already brought benefits to people with PWS and their families in Central and South America as the mere fact of holding the conference in Cuba has raised the profile of PWS in these many countries. As has been the case in the past we will be bringing together clinicians and researchers who are experts in PWS or who are wishing to become experts to be part of the Clinical and Scientific Conference. The Professional Providers’ and Caregivers’ and Parents’ conferences have become a major event bringing together, from across the world, those directly involved in the support and care of children and adults with PWS.

Our experience is that those involved in these different conferences go back home feeling reinvigorated and with new ideas. Cuba is a fascinating country with a complex and difficult history that has led to great resilience and ingenuity. Our hosts the Cuban Genetics Society are waiting to welcome us all. I hope you feel able to come. Registration will open very soon.


Tony Holland

President, IPWSO