Rare Diseases International (RDI) have today published their statement on COVID-19 and the impact on the lives of people with rare disorders and the response that is needed from Governments.
IPWSO, as a member of RDI, recognises that people with rare disorders, including people with PWS, are at risk during this time of the COVID-19 pandemic, not just because of the virus itself but also because services to families and to people with PWS may be disrupted. Also people with PWS, if they themselves become ill with COVID-19, must have access to the necessary health care regardless of ability to pay – universal health coverage is crucial at this time.
If you know of anyone with PWS who has developed COVID-19 please complete our survey so that we can better understand how this type of infection affects people with PWS and can have a better understanding about the treatment and support received wherever you are living in the world.