This is a very strange and difficult time for all of us wherever we live in the world. For some the coronavirus epidemic may appear to have passed, for others it is at the early stages. Countries are learning from each other and research is informing the actions that we as individuals and countries should be taking. There is still uncertainty as to what might happen when restrictions are relaxed and there is a year or more before a vaccine might be available. Our lives are more restricted and we are anxious about our health and that of our families.

We have put guidance on our website about what you can do to help prevent Covid-19 infection and also about the special concerns there may be for people with PWS. We are aware that circumstances may be very different for people in different countries but the basic principles of good hygiene and social distancing seem core to slowing down the speed of spread.

At IPWSO we would like to hear about your experiences of caring for people with PWS at this time and to encourage you to share these in this blog. Our experts on the Clinical and Scientific Advisory Board are extremely busy with their regular work and we would advise that if you have question about clinical issues relating to Covid-19 you first seek advice locally if at all possible. Where there are questions that clearly require an in depth knowledge of PWS we will seek guidance from our experts and compile a list of common questions and their answers.

Importantly, we want to learn from your experience if someone with PWS becomes infected with Covid-19. How did the illness present, how serious was it, how long did it last, and were there any particular complications? We want to build up our knowledge about Covid-19 and its impact on people with PWS and, for this reason, we want to be here for you.

Help us understand so we can better advise you – please send information on your experience or any comments to

Tony Holland