From Regional Patient Advocate Natasa Angjeleska
I have had communication via e-mail with the patient groups and the patient organizations in my region to explain to them the establishing, the aim and the operation of the Regional Advisory Group (RAG) in Southeastern Europe. I requested the nomination of an Advisor from each country and 10 April 2020 we could hold the first RAG meeting – due to the coronavirus lockdown via Skype. Representatives from Bosnia and Herzegovina, Bulgaria, Greece, Montenegro, North Macedonia, Serbia, Romania, and Turkey were present – and following the Skype meeting, I scheduled meetings with representatives from Albania, Croatia, Cyprus, and Slovenia. The meeting was following this agenda:
- What is the general situation regarding access to medications in time of the COVID-19 pandemic globally?
- Code of Conduct
- RAG establishment, questions and shared answers, roles and future meetings
- hae day :-) 2020 marking – plans and joint initiatives
I was invited to participate in the online platform initiative “From Gaps to Bridges: The Future of Patient Engagement in Central and Eastern Europe”. It took place 12 May 2020 as an Innovative Medicines Initiative funded-project PARADIGM. This is currently developing tools aiming to make patient engagement easier for all throughout medicines research and development process. I have participated in the third of three workshops aimed at improving the meaningfulness of the monitoring and evaluation framework for Central and Eastern Europe by enriching the co-developed framework with metrics that capture value from the regional perspective.
Prior to hae day :-) 2020 I was happy to participate in the realization of the hae day :-) campaign on Instagram that was born as an idea at the Youngsters’ Advocacy Workshop in Atlanta in 2019 by a group of youngsters that I facilitated. I was delighted when Sofija Popovic from Serbia and Jack Cope from the United Kingdom were willing to implement their idea and received mentorship support and guidance from Lisa Facciola and Nevena Tsutsumanova with the end result to run one week before 16 May 2020.
hae day :-) activities
Many countries in my region had innovative ways to celebrate hae day :-) 2020. They had to cancel planned public events and/or patient/physician gatherings due to the lockdown and restrictions regarding group gatherings because of the COVID-19 pandemic – but they didn’t lose their enthusiasm and were dedicated to finding alternative ways for celebrating the HAE awareness day.
The newly registered patient association HAE Croatia gathered a group of patients and physicians in front of the Pedestrian Bridge in the city of Osijek. With the bridge illuminated in purple, they gave interviews for the media as a continuation of awareness activities that started with the publishing of several patient stories. Furthermore, they were guests in TV programs thus contributed to the awareness-raising following the official registration of the national organization on 29 February 2020.
HAE Serbia also realized an amazing initiative with the illumination in purple of several beautiful landmarks in the capital Belgrade: the Aval Tower, the National Assembly, the Palace of Albania, the Ada Bridge, the Gazela Bridge, Branko’s Bridge, and the New Railway Bridge. HAE Serbia used #osvetlimohae and in that way contributed to raising awareness along with media interviews with the president of the association, Jovana Cvetkovic.
In Bulgaria, the national organization was able to promote a documentary film with testimonials from patients and physicians’ interviews. This contributed to a huge Bulgarian awareness campaign including guest appearances of the HAE Bulgaria President Danail Dimov on national TV channels where he explained about the challenges of life with HAE. He also talked about access to medications and what is needed to be regulated for HAE patients to have improved quality of life in Bulgaria.
HAE Turkey held a webinar with various sessions about the association and the disease. In the questions and answers section that took place at the end of the program, physicians answered questions received from the patients. During the broadcast, more than 140 participants were included on a single user basis. Considering that there would have been multiple participants in the same household, it is believed that the attendance was around 180 in total. HAE Turkey is very proud of the fact that this is so far the event with the most attendees in 2020. Considering the feedback, the organization has received, additional online activities are to be held in the coming period for patients to meet more frequently. The webinar broadcast was recorded and published on YouTube.
Each year the HAE organization in North Macedonia tries to mark the HAE awareness day. This year, in the setting of the global pandemic with social distancing, it was decided to celebrate the day with small but sweet tokens of appreciation for the professionals and friends who have been helping in our fight. Cupcakes carrying the motto “Many Faces One Family” were delivered to them. HAE patients wanted to brighten up the daily lives of our close friends and associates by sending out the message “I Swell, But You Cannot Tell, I Care Very Well!” HAE Macedonia also prepared and published a puppet theater show and a children’s rap song on HAE on social media.
In Romania Physician, Dr. Noemi Bara was guest in a TV interview where she spoke about the challenges and needs of HAE patients and contributed to marking hae day :-) 2020 as well.
Furthermore, many patients, friends and supporters from the Southeastern European countries registered their steps for the 2020 HAE Global Walk campaign.
Finally, it should be mentioned that the youngsters Sofija Popovic (Serbia), Ersan Sevinc (Turkey), Dejan Angjeleski (North Macedonia), Erini Giannakidi (Greece), and MonaLisa Baltatescu (Romania) participated in the HAE Youngsters’ initiative and joined other youngsters from all over the world in sharing their #togetherapart posts.