From Regional Patient Advocate Natasa Angjeleska:
In April 2019, I visited Tirana, Albania and met with the HAE patient group – a great reuniting with patients. We discussed the challenges they face due to restricted access to medications and how patients suffer and live under stress when they have limited access to treatment. I will share some resources from North Macedonia for use in emergency rooms and with physicians who are not so familiar with the disease. We talked about HAE International resources like web hosting and shared some of the awareness initiatives that organized in North Macedonia as an example to motivate them in undertaking actions in their country. Patients in Albania are coming up with some great ideas that hopefully can turn into awareness activities to improve quality of life when they get adequate treatments available.
I have also met with Dr Mehmet Hoxha and two other physicians from the department of allergology and immunology at the clinical hospital Nene Teresa in Tirana. The doctors showed interest in getting more information on medications, along with the procedures of delivering medications to patients in North Macedonia. They were also interested in other available therapies for HAE globally and in our region, and they are motivated to collaborate in the proposed suggestions to advocate for the availability of HAE therapies. The doctors are willing to share posters and brochures with basic information on HAE in the Clinical Center and emergency rooms. They confirmed readiness to support patients in any awareness activities that will be organized by them.
