From Regional Patient Advocate Natasa Angjeleska
I have had continuous communication with patient organizations, pharma and physicians in the past period. Most frequently the newly established patient organization from Croatia informed me and consulted about their plan for activities in the next couple of months, including children’s gathering and activities for the youngest members of HAE community in this country, accompanied by their parents. The meet-and-greet would be organized in the following way: lectures from a physician and an immunologist, workshop for children and parents, distribution of children’s books, a picnic, and a visit to the Tuheljske Toplice museum where the event is to be held. Sixty people are planned to participate: Twenty-five children, as many parents accompanying those children, five physicians, three representatives from the pharmaceutical industry, and three organizers. At the moment, the event has been scheduled for November, but it will depend on the situation with COVID-19.
I have had consultations and information sharing with the physician in Bosnia & Herzegovina regarding the establishment of a Rare Disease Patient Alliance as well as the development in identifying new patients in the country. So far, to the best of my knowledge, there might be around ten new potential HAE patients. About eight have been diagnosed with either angioedema or HAE, and they are still waiting for three more to be diagnosed.
An interesting thing happened with a couple of potential patients contacting the President of HAE Croatia who was able to refer those patients to the physician in Bosnia & Herzegovina, which wouldn’t have been the case if we hadn’t established our network previously due to their participation at the South Eastern Europe regional workshops.
Verche Jovanovska Jankovska, the Vice-President of HAE Macedonia, participated in the meeting between the National Alliance of Rare Diseases in Macedonia (NARBM) and the Association of Citizens for Rare Diseases in Children (LIFE) from Serbia regarding the signing of a memorandum on collaboration between the two associations. The memorandum is signed to improve the position of patients suffering from rare diseases and members of their families through the exchange of knowledge and information on the retkebolesti.com portal, HAE included. This will enable patients, physicians, pharma representatives etc. to have general information about many rare diseases translated into languages spoken in our region. It is envisaged that with typing the keyword at the portal, for example “Swelling”, will take you to a possible diagnosis that has this symptom and hopefully guide the patient and physician to run tests. Ivana Golubovic, the former President of HAE Serbia, is now coordinating the project for LIFE.
I started preparations for this year’s virtual 2020 HAEi Regional Workshop South Eastern Europe by sending all patient representatives an invitation for their presentation and receiving an answer from some of them. I invited Dr. Marcus Margerl and Dr. Marc Riedl to present as experts at the regional workshop, and both cordially accepted it. There will be lots of work regarding the recording of different sessions following the initial agenda I have planned. All sessions are to be translated in the languages spoken in our region and videos to be subtitled to be accessible and available to as many viewers as possible who are not fluent in English. I have communicated with a group of youngsters from the countries in my region and received feedback from Erini Giannakidi from Greece with the aim to prepare the youngsters’ track for the virtual regional conference.
