From Regional Patient Advocate Natasa Angjeleska
In the past couple of months, communication with patient representatives and physicians regarding the Global Leadership Workshop has been going on with high intensity.
The support to the patient and physician in Kosovo has continued. HAEi issued a support letter for access to treatment that was sent to the relevant decision-maker. I also met with pharma representatives to advocate for their interest in providing therapy for the patient. The physician has three more suspected cases, and hopefully, these patients will also agree to send blood samples to receive an accurate diagnosis.
Dr. Rushit Ismajli, Head of the Family Medicine Center in Pristina, Kosovo, has been added to the HAEi list of HAE knowledgeable physicians.
Access to preventive treatment is available to just one patient in Montenegro at the moment. The patient has shared with me only positive experiences after coming on preventive therapy, although he was previously struggling with multiple health conditions. He informed me that he has been attack-free for six months and hopes to continue receiving the medication as it was agreed with his physician, Dr. Katarina Mitrovic. Provided we plan to organize a patient meeting, this patient has offered to speak about his positive experience going from being sick, depressed, and in pain for a long time to now being a new person who almost forgets about having such a serious condition.
I received a translation of the HAE TrackR text in Slovenian, and hopefully, the app will soon be available for patients in Slovenia in their own language.
HAE Macedonia has translated the Emergency Room Poster into Macedonian, and after printing, it will be distributed to many departments throughout the country. On 30 September 2022, there was an educative session on HAE with teams of doctors and nurses from emergency rooms. This was a follow-up on the meeting about the challenges of HAE patients discussed with the First Lady of North Macedonia.
Speaking of the Emergency Room Poster, I have sent the documents for translation to HAE Albania and asked the organization to consider printing posters to support their activities. They are now working on the translation – and have planned a couple of activities for raising HAE awareness and reaching out to more patients.
Dr. Mensuda Hasanhodzic from Bosnia and Herzegovina has informed me that the first center for rare diseases will be established at a hospital in Tuzla, including all six patients with HAE that she cares for. This center will register patients according to their diagnosis and present this information to the Federal Government health authorities, thus giving a base for establishing treatment protocols.
On 10 September 2022, I was invited by the National Organization for Rare Diseases in Serbia (NORBS – Nacionalna organizacija za retke bolesti Srbije) to be part of a regional meeting in Belgrade. As a panelist in a “Patient Advocacy: Call to Action” session, I spoke about my experience as a mother of a child with HAE. However, I also had the opportunity to share information regarding my work as Regional Patient Advocate and the support HAEi provides to patients, families, and physicians.
