COVID-19
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.
Our survey
Please read the participant information before taking the survey. This survey is to be completed by the family or carer of a person with PWS who has had COVID-19 infection. Early results can be seen via this link.
In German
Informationsblatt für TeilnehmerInnen
COVID–19: Symptome, Krankheitsverlauf und Folgen bei Menschen mit dem Prader-Willi-Syndrom (PWS)
In French
Fiche d’information pour les participants
COVID-19: présentation, évolution et conséquences chez les personnes avec un syndrome de Prader-Willi (SPW): une étude
In Spanish
Ficha informativa para los participantes
COVID-19: su presentación, curso y resultado en personas con Síndrome de Prader-Willi
Rights of people with disabilities in the COVID-19 pandemic
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 above.
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.
Guidance on COVID-19 and PWS
- NEW: People with PWS and COVID-19 immunisation: IPWSO COVID immunisation statement December 2020
- German translation: Stellungnahme des Clinical and Scientific Advisory Board (CSAB) der IPWSO zu Menschen mit PWS und COVID-19 Immunisierung
- IPWSO guidance on Discussing COVID-19 and hospital care with a person with 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.
- IPWSO guidance on supporting a person with PWS during COVID-19: a guide for families and carers written by our Famcare Board, 22 April 2020.
- Unterstützung von Menschen mit dem Prader-Willi-Syndrom während der Corona-Pandemie. Ein Leitfaden für Familien und Betreuer von Menschen mit PWS – kindly translated by Prader-Willi-Syndrom Vereinigung Deutschland e.V.
- Prader Willi syndrome and strategies for coping with COVID-19, tips for Parents written by Dr Claire Crowe, Senior Clinical Psychologist at the PWS Service, CHI Tallaght at Tallaght University Hospital, Dublin (reproduced here with permission)
- IPWSO statement on COVID-19 (last updated 18 March 2020)
- Spanish translation: Pautas para manejo preventivo Coronavirus
- German translation: Coronavirus Erkrankung 2019 (COVID-19) Erklärung an die Mitglieder
- Guidance from the Prader Willi France: Le Centre de Référence du SPW et Prader Willi France: Informations du centre de référence sur le coronavirus (updated 16 March 2020)
Your Experiences
To tell us about your experiences of life with PWS during the pandemic please get in touch…
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.