From Regional Patient Advocate Maria Ferron
These last months have been hectic due to the organization that the 2022 HAEi Global Leadership Workshop entails, but we were all excited to meet face-to-face again after such a long period.
Firstly, I would like to say that I have delivered the posters developed by HAEi requested by Libya and Mauritania to be distributed in private and public hospitals, aiming to raise awareness and locate more patients.
I am also happy to announce that the Member Organizations and doctors lead in Algeria and Morocco have been working very hard to get the local authorizations to register HAE modern treatments – more news to come soon!
Furthermore, I want to highlight that many clinical trials from different pharmaceutical companies are taking place in Europe, so if you are interested in enrolling in one, don’t hesitate to contact your national organization for more information.
Finally, I am happy to announce that fellow Regional Patient Advocate Michal Rutkowski and I were invited to participate with an article and a patient story made by National Contact Ahmed A. Aboudair from HAE Libya for the RARE Revolution Magazine. This is a quarterly digital magazine that raises awareness for rare and genetic diseases, and after partnering with CSL Behring, they are producing a spotlight series of the magazine >> have a look.
