The ERN-EuroBloodNet is facing unprecedented challenges to gather and spread information on the correct treatment and management of infection by Coronavirus (COVID-19) in patients affected by Rare Hematological Diseases
The ERN is also helping patients affected by Red Blood Cell Disorders who are also infected with the new coronavirus to receive care and cure adequate to their specific situation by establishing a ERN-EuroBloodNet Collaborative Platform on Red Blood Cell and COVID-19 patients
Finally, the ERN has dedicated a specific educational session on COVID-19 addressed to Sickle Cell Disease patients and parents' patients during ASCAT 2020
During this experience, that has gather more than 40 SCD patients representative worldwide, the ERN-EuroBloodNet has reached the outcomes that patients find difficult to know who/what information to trust about COVID-19 infection. They felt fear and anxiety about how to handle the daily life and respect the barriers gestures, and even they did not know if getting hospitalized during vase-occlusive crises would have been good or bad for them in the context of the coronavirus pandemic. What is the data on people with SCD getting affected?
This is the reasons why the ERN-EuroBloodNet has organised a webinar dedicated to SCD and COVID-19 infections addressed to SCD Patients and parents patients.
Webinar is led by two clinicians at the front line dealing with the COVID-19 pandemic and SCD adult and paediatric patients, Prof Mariane de Montalemebert (SCD paediatric specialist) and Dr Noémi Roy (SCD adult specialist). The aim is to support people living with SCD, families and caregivers that are currently dealing with COVID-19 case.