From Regional Patient Advocate Natasa Angjeleska
I have participated in Takeda’s External Stakeholder meeting on 13 October 2020 upon invitation from the Head of the Takeda representative office in Belgrade, Aleksandar Bjelski. I was one of two patient representatives invited to speak about living with HAE, as a caregiver, but also as a patient advocate. My talk was 5-7 minutes to introduce some of the aspects of challenges and needs of HAE patients, as well as support and initiatives undertaken as Regional Patient Advocate. Among others Giles Platford, the President of Europe & Canada Business Unit for Takeda, Jiri Smejkal, Hrvojka Kostelac and other Takeda representatives were present during this meeting.
I accepted an invitation from NORBS (the National Organization for Rare Diseases) in Serbia to be a speaker at a virtual regional conference “CARE FOR RARE” held on 23-24 October 2020. I presented the project in which I was involved in the course of 2019 implemented by the National Alliance for Rare Diseases Macedonia (NARBM) where we have partnered with patient representatives for different rare diseases to create a National Strategy for Rare Diseases in cooperation with the Ministry of Health. This document is still not adopted by the Government, due to the crisis caused by the pandemic. Nonetheless, we plan to re-initiate our demand for adoption as it regulates very important aspects from the health care field (diagnostics, treatment, and patient involvement) as well as social care and education.
I have spent most of the time in the course of September and October to prepare the 2020 HAEi Virtual Regional Workshop South Eastern Europe. Among many other things, the preparations for the workshop involved scheduling and recording individual interviews with patient leads from Bulgaria, Serbia, North Macedonia, Croatia, and Turkey, who accepted to participate in the patient track. Please see the article on the workshop later in this issue of Global Perspectives.
With some of the patient leads from my region, I have been discussing the implementation of the Regional Medical Advisory Panel initiative designed to integrate into HAE International’s operations. The aim is for the Regional Medical Advisory Panel to provide the global organization with better insight into challenges at the regional and local levels and to assist HAE International in adapting existing programs and designing and implementing new initiatives. I have asked the patient representatives to nominate a physician from each country to the HAEi Regional Medical Advisory Panel.
Dr. Vesna Grivcheva Panovska from North Macedonia prepared a survey called “Perception of the Current Status and Expectations of the Long-term Impact of COVID-19 on HAE Management from the perspective of HAE Patients and HAE Treating HCPs”. HAE International and HAE Macedonia, as well as other patient organizations, assisted in sharing the link to the survey that was translated in multiple languages to enable collecting a variety of responses. Dr. Grivcheva Panovska was very satisfied with the response rate gathered.
Dejan Angjeleski, a youngster from North Macedonia, was featured in a book called “A Day in my Life” with 30 stories of people with different conditions and disabilities. In his story, he explains about his life with HAE. He talks about his wish to be like everybody else, to work and travel independently, hoping that new therapies will result in improvement of the quality of his life.
The network of ACARE centers is spreading in South-Eastern Europe. Accreditation of the ACARE center in Bulgaria was announced in November, and we expect more applications for new accreditations to be submitted over the coming months.
