From Joana Allkoci, HAE Albania
We wish you good health and good work!
In the framework of hae day :-), on 12.05.2026, some of the patients of HAE Albania, came out to an information and awareness-raising activity for the community of Tirana. We titled the activity “OUR DAY”. Wearing purple T-shirts with the logo “MANY FACES, ONE FAMILY”, we chose the largest park in the city, considering that in this area there is a large influx of people who spend their free time in nature.
The activity culminated in friendly conversations with different people, from whom we understood that their interest was not only high, but that they themselves told us stories of rare diseases and loss of life due to the lack of information about the disease and the lack of medications. We distributed additional information through leaflets.
Most of the participants helped us take these photos, which we are pleased to share with you.
On May 16, some patients of HAE Albania will run in the largest park in Tirana, for better physical and mental health.
Also, on Saturday, May 16, Silvana Alkoci, Executive Director of HAE Albania, will appear on a radio station and in visual media as well. She will talk about:
- International hae day :-) May 16
- What is HAE?
- The risks that HAE brings
- What have we achieved so far?
- What will be done in the future?
- Partnership with Regional Patient Advocate Ms. Natasa Angjeleska and HAEi.
We will also have a meeting with representatives of the Ministry of Health and Social Welfare, with whom we will discuss the reimbursement of the prophylactic medication “LANADELUMAB”, to make it more accessible for all patients with aggressive HAE.
Furthermore, we will inform you as our work continues.
We wish you all good health and hugs from everyone at HAE Albania!
