the pandemic of the Covid-19 (Corona virus)

the pandemic of the Covid-19 (Corona virus)-message for all the patient organisations


According to the current situation with the pandemic of the Covid-19 (Corona virus), we know it to be very difficult for  amyloidosis patients to manage this additional risk. 

As the Alliance of Amyloidosis Patient Organisations, we would like to suggest to all the POs to discuss with their national and local experts how  the treatment and the delivery and administration of medication for  our patients can be made as secure as possible from the risk of contamination.. 


It seems to be very crucial for patients suffering from a severe disease like amyloidosis to avoid exposure to such a risk  specifically in the context of their regular treatment to clinics or hospitals, and travel to such places. 

If  feasible in the clinical situation of your country ,we would recommend home delivery of the medication or home administration by a specialized nurse. It would be safer, more reassuring,  and less stressful for the patients.

We are in a very exceptional situation, we need to find together exceptional solutions.


We are aware that, due to the prevailing corona crisis, the immediate implementation of this guideline for all patients might be hampered by the scarcity of medical personnel in hospitals and clinics, but that any step which could made in the direction of making home administration of medication possible as soon as possible, would be very much welcomed by the  Amyloidosis patient community .

"You will never be alone "

Have a good and safe week end
the Board Directors 

Jean-Christophe Fidalgo

Koenraad Verhagen

Giovanni d’Alessio