5th – 7th April 2013 in Sarajevo (BiH)
This was the biggest meeting of Gaucher and LSD patients in our region ever.
There were more than 100 participants:
‐ around 25 LSD patients,
‐ 18 physicians, nurses and researchers,
‐ families and friends of the patients,
‐ representatives of the following patient associations:
o Rare Disease Association of Bosnia and Herzegovina,
o Slovenian Gaucher Association,
o Rare Disease Association “Life with Challenges”, Macedonia,
o Serbian Gaucher Association,
o Slovenian Fabry Association,
o Slovenian Muscular Dystrophy Association,
o Rare Disease Association “Life”, Serbia,
o Hunter Syndrome Association Serbia,
o Croatian Alliance for Rare Diseases,
o National Alliance of People with Rare Diseases, Bulgaria,
‐ representatives from Bosnian Ministry of Health,
At this meeting, we learned about the situation regarding treatment of LSD in individual countries. There are big differences between countries: how the patients are connected to each other, how they are treated and subsequently how big their quality of life is. We shared the examples of good practice and good experience and we promised to each other our further support and help.
The main lecture was prepared by Dr. Nadia Belmatoug (France) who presented Gaucher disease. Many questions and a discussion followed this presentation. We are grateful to Dr. Nadia Belmatoug who kindly accepted our invitation and shared with us her rich experience on treatment and research of Gaucher disease.
The attendees were very satisfied with the workshops where we shared our personal experience about living with the disease. 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 rare disease area. It is important that physicians and patients work together, because together we are stronger.
Finally, we would like to say a big thank you to Genzyme, to Asocijacija XY and to Koalicija organizacija u zdravstvu u BiH for their logistical and financial support: transportation organisation, hotel reservation, propaganda material preparation, conference room preparation, program for children, sightseeing tour etc.
A special thanks goes to all participants, because also their presence, their contribution and cooperation made this meeting a successful one.
Looking forward to our further cooperation.
With best wishes,
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, PhD, Slovenian Gaucher Association