Gaucher patients, their families and doctors from Slovenia, Croatia, Bosnia & Herzegovina, Serbia, Montenegro and Macedonia met in Sarajevo, from 5th-7th April 2013.
The second regional meeting of Gaucher patients and The first regional meeting of patients with lysosomal storage diseases was attended by more than 100 participants: around 25 LSD patients, 18 healthcare professionals, many family members of the patients, representatives of 10 patient associations, representatives from Bosnian Ministry of Health, and journalists. This was the biggest meeting of Gaucher and LSD patients in our region ever.
Firstly, we learned what lysosomal storage diseases are. Then we listened to short presentations about the general situation on LSD in individual countries. There are big differences between countries: some patients are treated very well, some are on humanitarian aid and many are still untreated. Some patients are not connected to each other and they feel isolated, whereas others are active members of patient associations. There are still patients who do not receive treatment due to logistical reasons (too far to go to hospital, cannot take a day-off).
We shared the examples of good practice and good experience (e.g. Fabry center in Slovenia, home therapy) and we promised to each other our further support and help. Following the lecture by Dr. Nadia Belmatoug (France) many questions about Gaucher disease were asked. The attendees were very satisfied with the workshops where we shared our personal experience about living with the disease. Seven workshops á 10-15 people were formed and different topics were discussed in different workshops (e.g. how to live as a patient or as a family member, socio-economic aspects, sharing group for physicians). The patients, family members and physicians spoke about everyday challenges they are confronted with. Our fears and problems are similar, no matter where we live. Fortunately, among us, there are many brave and generous persons who have already done a lot for the well-being of LSD patients. This brings hope and courage for our future activities and cooperation. We are happy that many physicians and nurses from all countries from our region attended the meeting. We are grateful to our physicians for their sustained efforts to improve the situation in the rare disease area.
We are grateful to Genzyme and Association XY who supported the meeting.
Borislav Đurić, Rare Disease Association of Bosnia and Herzegovina
Darinka Šulić, Serbian Gaucher Association
Davor Duboka, Serbian Gaucher Association
Vesna Stojmirova, Rare Disease Association “Life with Challenges”, Macedonia
Irena Žnidar, Slovenian Gaucher Association