General information

On 30 January 2020, The World Health Organization (WHO) declared the outbreak a public health emergency of international concern. On 11 March 2020, WHO characterised COVID-19 as a pandemic.

PH CARE patient questionnaire

In order to better understand the COVID pandemic effects on the care of PH patients and to help prepare for future challenges, a patient-centric survey has been started in the last days of May 2020. We received a great present for our #WorldPHDay2021 celebration from the Orphanet Journal of Rare Disease (OJRD): the long awaited […]

PH reference center survey published

Two COVID questionnaires were launched earlier this year. One of the surveys was disseminated within the expert centres and provided useful insight of the effects of COVID-19 on PH patients.

Mini COVID-19 patient survey

We ran an anonymized COVID survey amongst the patient leaders of our members to map the effect of the COVID pandemic so far. We received 24 responses from our 33 member associations, which might reflect unbiased data.