We know that this is a difficult and uncertain time. Check this page for updates about COVID-19 and PWS.

Our response to Covid-19 (Coronavirus)

IPWSO survey on how the COVID-19 infection affects people with PWS (launched 29 April 2020)

Early results can be seen via this link.


This survey is to be completed by the family or carer of a person with PWS who has had COVID-19 infection. 

  • En français

  • Fiche d'information pour les participants

  • COVID-19: présentation, évolution et conséquences chez les personnes avec un syndrome de Prader-Willi (SPW): une étude

Guidance on COVID-19 and PWS


  • In the context of COVID-19, IPWSO has been asked for advice about whether children with PWS should return to schools as soon as they re-open or whether they and their families should continue to stay at home for longer than others. Our advice is summarised here.


Your experiences

To tell us about your experiences of life with PWS during the pandemic please email us.




Visit our Blog

Early results from our PWS and COVID-19 survey. 8 July 2020


Adapting to life in lockdown, a view from South Africa. 13 May 2020

PWS and COVID-19, an update from Tony Holland. 8 April 2020

A teenager with PWS tells us about life under the new restrictions. 21 March 2020

A view from our President, Professor Tony Holland from the University of Cambridge.  19 March 2020

General guidance and statements of interest:

  • Statement from Rare Diseases International on the international response to COVID-19 and the importance of keeping the needs of people with rare diseases high on the agenda.

  • COVID-19 and Rare Diseases: EURORDIS provides very useful on-going information on COVID-19 including a summary of some of the recent scientific developments.

  • Special Envoy of the United Nations Secretary-General on Disability and Accessibility, Joint Statement: Mental Health of Persons with Disabilities during the COVID-19 pandemic.

  • The World Health Organisation has provided a lot of guidance to the public.

Rights of people with disabilities in the COVID-19 pandemic

COVID-19 pandemic has affected every country in the world. Many people who develop a COVID-19 infection have minor symptoms and do well and recover fully. However there are a small number of people who become very ill and may need assistance with breathing and have to be nursed in intensive care. Countries vary in the extent to which health facilities are available but even in highly resourced countries a major concern is whether health services will be able to cope.


The link below sets out the responsibility of all countries to continue to ensure that people with disabilities receive the treatment they need and have access to care and treatment if they become unwell with COVID-19. Translations are available in Chinese, French, Russian and Spanish. Please let us know your stories, if you know of anyone with PWS who has had COVID-19 and also help us with our COVID-19 survey.

  • The United Nations Human Rights, Office of the High Commissioner: Joint Statement: Persons with Disabilities and COVID-19 by the Chair of the United Nations Committee on the Rights of Persons with Disabilities, on behalf of the Committee on the Rights of Persons with Disabilities and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility.

Further information:

> Guidance for families

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Salisbury House
Station Road
Cambridge CB1 2LA

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