In the course of December 2020 and January 2021, I held online meetings with patient representatives from Montenegro, Greece, Albania and Bosnia and Herzegovina. Some of the patients wanted to hear details about the vaccines for COVID-19 because they feel insecure about the safety of people with HAE. I have re-shared the link to the video of Professor Marcus Maurer, as well as explained the official advice issued from HAEi regarding vaccination.
The University Clinic of Respiratory and Allergic Diseases in Golnik has become the first ACARE Center in Slovenia.
In February, I used a great deal of my time in communication with member organizations in my region regarding the hae day :-) anniversary initiative.
I was engaged in planning an event to mark Rare Disease Day in North Macedonia. I gave an interview about the situation of rare disease patients’ care and access to therapies for a Macedonian Information Agency that was published on 28 February. Also, I have been invited to an official event organized by the Prime Minister and the Minister of Health of the Republic of North Macedonia. We discussed the present situation and our demands and challenges as patients with rare diseases and had a chance to present our suggestions for improvement of the overall conditions and quality of life of patients, caregivers and families.
I was engaged with the HAE Macedonia team, Natasha Jovanovska Popovska and Verce Jovanovska Jankovska and initiated negotiations on getting prophylactic subcutaneous treatment in two youngsters who are dealing with frequent attacks.
On 28 February, I had a presentation entitled “Act locally, think globally” at the patient meeting organized by HAE Serbia on the occasion of the organization’s fifth anniversary. I was asked to present different treatment options across countries in South Eastern Europe and discussed some of the challenges of HAE patients and their family members. Furthermore, I highlighted the part of the HAEi website where information and video discussions about HAE and COVID-19 (including vaccination) are posted. I also presented the HAEi Advocacy Academy opportunities via online courses and encouraged patients to start using the HAE Companion app. I also talked about the brand new HAE TrackR app that will hopefully replace the paper documentation that patients are using to track their attacks.
