Patient Associations in Alpe Adria Region Host First Ever LSD Meeting

Barbara Diana | June 11, 2013

Patient associations from Bosnia & Hercegovina, Slovenia, Macedonia and Serbia came together last month in Sarajevo to host the first LSD meeting in the Alpe Adria region. Participants included patients, caregivers, government officials, journalists and others whose lives had been touched in some way by a lysosomal storage disorder. Despite the wide ranging backgrounds and perspectives of participants, attendees found that they were able to learn a great deal from each other, share experiences and connect.

It was the largest meeting of LSD patients – and Gaucher patients in particular -- in the Alpe Adria region ever. More than 100 participants from six countries (Slovenia, Croatia, Serbia, Montenegro, Macedonia and Bosnia & Herzegovina) actively participated in the program. The meeting also served as the second regional meeting of Gaucher patients.

The agenda included lectures on lysosomal storage diseases and presentations on the status of LSD in each country. Attendees shared their personal experiences about living with the disease and discussed issues such as the socio-economic aspects of living with a LSD or caring for a family member.

Participants discovered a wide variability in how patients with LSDs experience their disease based on geography. Some patients are not connected to each other and feel isolated, whereas others are active members of patient associations. “Fortunately, among us, there are many brave and generous persons who have already done a lot for the well-being of LSD patients," said Irena Znidar, leader of a Gaucher patient organization from Slovenia. "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.”

Meeting organizers included the Association of Patients with Rare Diseases from Bosnia & Hercegovina, the Slovenian Society of Patients with Gaucher Disease, the Macedonian Society of Patients with Rare Diseases,  Life with Challenges and the Serbian Society of Patients with Gaucher Disease.

Pictured left to right: Organiser of the meeting, Mr. Borislav Đurić; President of Associacion of Patients with Rare Diseases Bosnia & Hercegovina, Darinka Sulić; President of Serbian Society of Patients with Gaucher Diseases, Davor Duboka; Executive Director of NORBS (Serbian Society of Patients with Rare Diseases), Vesna Stojmirova

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