To mark the International Gaucher Day, the Macedonian association for rare diseases LIFE WITH CHALLENGES together with the Albanian association organized a meeting on 8-9 October in Struga, Macedonia. At the meeting we had families, patients, doctors and nurses connected to Gaucher disease type 1,2 and 3. Also we had representatives from Genzyme and Pfizer who sponsored this meeting.
Patients talked about their challenges and problems regarding therapy and they shared experiences about what is going on in their countries at the moment, how they were diagnosed, what kind of therapy do they receive, and what kind of tests do they do … they talked about home treatment and will it be a good option to have in future. We have the possibility to also hear a story from a patient who was on a clinical trial on Cerdelga and now he is still on the pill, which was a new experience for all patients. We truly hope for a future where patients together with doctors can choose therapy that is most suitable for the patient and with most quality of life for the patient and the family.
Doctors from both countries (Dr Biljana Coneska Jovanova) had presentations about what is Gaucher disease, and about the patients in the countries (treatment, challenges, future options).
We realized that we face some same and some different problems and that we can help each other to do more for the patients.
The support from EGA is very important, because of EGA we manage to came together and talk, and now there is an association of patients in Albania that will soon join EGA. We agreed that the most important thing in future that we expect from EGA in this region is education of doctors about diagnosis and treatment. We hope to have the next meeting in Albania in spring time and to have guest lecturers – doctors from EU.