From Regional Patient Advocate Natasa Angjeleska

In October, I was focused on stirring up the countries’ interest in HAEi resources. I invited patient representatives to a member organization online meeting for my region, where we had an opportunity to discuss the situation regarding access to therapies, new initiatives, challenges etc. in the past period. I also promoted and explained a bit more about the use of HAE TrackR and HAEi Advocacy Academy and reminded the national representatives about the benefits of these resources. I told them that Advocacy Academy each month has new courses in the Exclusive Access area for member organizations as well as an open-access section and that more courses are regularly added. Again, I encouraged the member organization representatives to use their Exclusive Access code to register a profile and offered my help should they need any. 

The meeting was attended by 14 participants from 11 countries. They were all very excited about the opportunity to see and discuss. Unfortunately, the representative from Bulgaria was unable to participate. Still, we had an additional discussion in November and added new aspects regarding organizing joint webinars with experts with a focus on genetic therapies.

Ersan Sevinc from HAE Turkey reported that they had two big online meetings with patients in the past period and now see younger patients participating. He added that the President of HAE Turkey, Gökben Yurdakul, will meet with paediatricians to discuss all therapies. He also reported that 90% of patients have been vaccinated for COVID-19 as they belong to the prioritized group. The patient representative from Bosnia and Herzegovina said that patients received a medicine donation from Takeda, and together with the physician are pursuing to secure access to modern therapies in their country.

HAE Montenegro reported more good news:  They have managed to regain access to Firazyr for all patients and are awaiting approval for one patient to receive preventive therapy due to many health issues and complications. 

In Serbia, three new patients are included in the preventive treatment after good results experienced in one patient and approval from health authorities. In Bulgaria, six adult patients are now receiving prophylactic therapy. HAE Bulgaria informed that throughout the year, they have arranged that all doctoral meetings (pediatricians, immunologists, anaesthesiologists, geneticists, etc.) included a session for HAE. This has contributed to increasing information and awareness among doctors about HAE. 

I have participated in the project Education for Macedonian Patients initiated by Dr. Grivcheva, logistically supported by HAE Macedonia and financed by Takeda. The first part of the project happened on 29 November 2021. It started with a lecture by Dr. Emel Aygoren Pursun on “The burden of living with HAE “. This lecture was followed by a presentation from Dr. Marcus Maurer on “The aims of treatment of HAE and how to achieve them” while Dr. Avner Reshef spoke on “Angioedema Therapy: What’s in the Horizon? “The event was chaired by Natasha Jovanovska Popovska and Vesna Grivcheva Panovska, which was a nice example of patients and doctors working together. Simultaneous translation was provided for the event so that Macedonian patients who are not fluent in English could follow. The lectures sparked the interest of patients and their caregivers from North Macedonia who attended it, and after the meeting they discussed it extensively.

HAE TrackR is being continuously translated into more languages in my region; most recently, it has become available to users in Greece and Croatia.

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