From Regional Patient Advocate Natasa Angjeleska
I have had intense communication with the Member Organizations making sure that they were aware of the HAEi newsletter announcing the Global Leadership Workshop in October 2022. In addition, I had continued contact with some of them about the need for translation at the workshop. I’m happy that patient representatives from all countries in my region are interested in participating and have applied for travel grants. Their applications were approved, and registration was finalized by the end of May.
In Bosnia-Hercegovina, the patient representative got in contact with a patient group that is in the process of registering an alliance for rare diseases on a federal level in their country. The aim is to include HAE.
HAE Cyprus has informed me that Takzyro has been approved, but the health authorities have not yet brought it into the country. HAEi issued a letter supporting their request and submitted it to the health authorities.
I have had intense, almost daily, conversations with patients and caregivers from Kosovo in the past period. I recently had a more extended conversation with Dr. Rushit and explained the medicinal products recommended. Furthermore, I sent a link to papers describing HAE in general as well as medications and the influence of the disease on the quality of life of the patients.
I’ve sent information regarding the translation of the HAEi app TrackR to Bulgaria and reminded HAE Cyprus that the app is already translated into Greek, and their patients can start using it.
I recommended Natasha Jovanovska Popovska from HAE Macedonia to attend an ACARE webinar titled “Make a Difference – Mitigating Disparity – Patient and Physician Perspectives in the Treatment of HAE”. During the preparation of the webinar, a pre-recorded video was required from patients participating, in addition to their participation. Natasha filmed a five-minute video on “My Life with HAE”, where she talked about the dark past for patients from North Macedonia and a brighter looking future. She emphasized the need for prophylactic treatment for some patients as well as the need for an individualized approach to treatment for various patients.
More good news from North Macedonia as the first ACARE Center has been accredited: The Clinic for Allergology and Dermatology in Skopje.
One more thing from North Macedonia: Prof. Dr. Vesna Grivcheva Panovska prepared a webinar on “Coping with HAE in a Time of Pandemic”. The first part of the webinar contained presentations by Dr. Laurence Boullet presenting the case in France and Dr. Mauro Cancian presenting the case from Italy. The second half was a panel discussion and a Q&A session with the participation of HAE physicians from Romania (Dr. Noemi Bara), Croatia (Dr. Ljerka Karagalapic), Serbia (Dr. Slagana Andrejevic), Albania (Dr. Eris Mesonjeshi) as well as patient representatives from North Macedonia (Natasha Jovanovska Popovska) and Turkey (Ersan Sevinc).
As for Albania, Silvi Bastri and Joanna Alkoci inform us that the process for registration of the patient organization is finalized, and HAE Albania has, among other things, made a logo. A letter has been sent to the health authorities on the consequences of non-available treatment for HAE in Albania. Based on the death of two patients, HAE Albania has requested immediate access to therapy in all 12 regions of the country. Most recently, HAE Albania has met with a representative from the Ministry of Health and elaborated on the challenges and needs of HAE patients.
Regarding hae day :-) 2022, I was very active in promoting the activity challenge among patients and the general public and shared invitations for participation many times via SoMe. I am happy that a lot of patient representatives, caregivers, physicians, friends, and pharma representatives supported our global awareness initiative.
Many countries from my region organized activities to celebrate hae day :-) 2022:
- HAE Bulgaria prepared an extensive information campaign with two videos that can be watched on their website. In addition, Prof. Maria Staevska and President Danail Dimov from HAE Bulgaria participated in the program of BNT1 “100% Awake” dedicated to HAE.
- HAE Croatia held its annual patient-physician meeting in Shibenik. This gathering had great presentations from specialists covering topics like treatments, gender differences, and pediatric patients.
- HAE Greece held a press conference, announced its new website, and presented a short video produced to inform the public about HAE.
- On 14 May, HAE Macedonia organized an event to raise awareness among the general public. This event was supported by the dance studio EUREKA through performances in a newly opened shopping center frequented by numerous people. HAE Macedonia distributed T-shirts with the awareness day logo for the dancers as well as for people recording events on the HAEi activity challenge website.
- HAE Serbia organized a round table “Let’s Get to Know Each Other” at the Crystal Hotel in Belgrade. They also had several buildings in Belgrade lit in purple.
- In Turkey, Prof. Nihal Mete Gökmen organized the 1st National Hereditary Angioedema Conference. It was a massive success, with more than 90 specialized physicians willing to learn more. No doubt, this will make it easier to access HAE specialized physicians for patients around the country.
