From Regional Patient Advocate Natasa Angjeleska
The first preventive treatment started for one boy in North Macedonia, suffering from HAE attacks every four to five days. Thus far, the young patient responds to the new treatment very well, with no breakthrough attacks.
HAE Turkey has held a very successful meeting in Denizli with physicians and caregivers to come together with children and young patients and their families to share their HAE experiences. They discussed attacks experiences and got support from the psychologists who participated in the event.
I held meeting with a broader group of patients in Bosnia and Herzegovina. It was a very pleasant meeting, and I managed to respond to their questions regarding different HAE treatments available in general, specifically about the treatments available in North Macedonia. I also presented different awareness and advocacy activities we’ve undertaken in the past five to seven years in North Macedonia to make treatment available. Finally, we agreed on some concrete things to be implemented in the coming period.
Things started moving in Kosovo, as I held a meeting and exchanged many messages with a physician who treats two HAE patients. I’m also now communicating with a patient and a caregiver, trying to provide them with information about the disease, diagnostics, and treatment options. He was able to come to a medical examination in Skopje at Prof. Grivcheva who also scheduled laboratory testing to confirm the diagnosis. This patient has HAE type 2.
In December and January, I’ve participated in meetings with KalVista representatives to discuss clinical rollout in North Macedonia, Albania, and Kosovo. I held meetings with a representative from Exceed Orphan – distributer for Ruconest® and discussed availability options for patients in Albania, Bosnia and Herzegovina, and Montenegro.
In February, most of my activities were around organizing Rare Disease Day in North Macedonia as I was one of the speakers at the Rare Disease Day Meeting. I addressed the challenges in front of the Minister and Deputy Minister for Health, The First Lady/spouse of the President of North Macedonia, directors of different University Clinics, members of the Rare Disease Committee, patients, caregivers, pharma representatives, and media.
I have assisted patients in Albania in establishing communication with a new patient, who unfortunately lost his twin brother due to HAE not being diagnosed on time. This sad occasion also had me urge the representative for Ruconest® for Albania to communicate with both physician and patient representatives to hear their needs for improved access to medications in the country.
Together with HAE Macedonia representatives, I held a meeting with HAE Greece to assist in some aspects of cooperation with pharma companies, submitting budget proposals, budgeting, etc. HAE Greece provided input in the form of a case study about registering patient organization course that is part of HAE Advocacy Academy now.
I continued sharing information about each patient’s advantages when using the HAE TrackR app and asked more countries to translate the application to the local language to become more available to patients everywhere.
