On 20-21st april 2013 patients and doctors from the Balkan countries gathered in Park-hotel “Moskva” Sofia to share their experience with living with a rare disease and the treatment and socialization problems they face at the Second Balkan RD Conference “Better communication – better treatment”.
The conference was opened by the Chairman of the National Alliance of People with Rare Diseases Vladimir Tomov – the host of the event. The participants were welcomed also by Dr.Tasheva – an expert at the Bulgarian Ministry of Health, and by a representative of the National Health Insurance Fund.
Prof.Rumen Stefanov from the Information Centre for Rare Disease and Orphan Drugs in Plovdiv spoke about the European present and future policies in the field of rare diseases. Eric Lange presented the results of a project to develop guidelines for optimal care for PKU patients in all European countries. Lisen Mohr presented the services performed by the Norvegian Rare Disease Centre directed towards the RD patients. In the end of the first session Vlasta Zmazek spoke about EURORDIS activities and projects.
After the break Prof.Stefanov presented the current situation with rare disease care and politics in Bulgaria. Four years after the start of the National Programme for Rare Diseases it is still expected the diagnostic and laboratory activities, related to the genetic screening, to become financed by the National Health Insurance Fund; there is no detailed analysis and assessment of the achievements so far and restructuring of the remaining tasks; there is no patients-doctors consensus on the future goals and tasks; unadequate funding and lack of transparent control over Programme implementation.
Next Prof.Ugur Ozbek from Istanbul University spoke about the current situation of rare disease issue in Turkey and the health system organization. Bojana Miroslavlevic from Serbia moved the audience with her account about the eight children with Button disease in her country and the struggle of their parents, the fundraising campaigns, the search for help and treatment abroad and the fight for their lives. Dr. Borislav Borisov presented the new European system for adverse reaction to drugs reporting. For a first time not only the medical professional but also the patients will be able to send information about the unexpected effects of drug administration to achieve more precise and up-to-date information on medicines safety. Dimitar Valchev talked about the psychological support to rare disease patients and their families aiming to improve their current condition.
The next session was dedicated to the situation concerning rare diseases in the different Balkan countries. It was opened by Vladimir Tomov who made a historic overview of the activities of Gaucher Association and National Alliance of People with Rare Diseases. He pointed out the importance of the international help and collaboration for the progress in the field of rare diseases in Bulgaria. Now that some of the rare conditions’ treatment is reimbursed by government and the relations with the authorities are becoming more and more positive we are working more diseases to be financed by NHIF and to get better care for the patients. Dragan Djurovic from Serbian CF Association spoke about the problems in his home country. Sanja Peric from Croatia demonstrated the sucesses of their PKU patient organization, the activities and summer camps for the youngsters with the condition, The books and magazines they publish. Borislav Djuric from Bosnia spoke mostly about the problems of the patiemts in his small country and the fact that many of them go abroad to the neighbouring states to receive treatment. Ralica Stan and Kate Theohari narrated about the situation in Romania and Greece. Vesna Stojmirova mentioned the positive experience of the Macedonian patient organization with a foreign diplomat wife who is their public supporter and helps a lot for getting their issues in the media or helps them in their contacts with the government authorities. The session ended with Ivan Ivanov’s narrative about the Organization of People with Thallasaemia in Bulgaria and the successes they have achieved.
The participants from Bulgaria, Greece, Romania, Turkey, Croatia, Montenegro, Slovenia, Serbia. Bosnia, Macedonia and Albania continued the disscussions on the next day, when they watched the presentations about the latest achievements in some rare diseases’ treatment made by Prof.Mihailov, Prof. Gergeltcheva, Prof.Zaharieva, Prof. Turnev, Prof. Stoeva and Dr.Kadam.
We hope that the new contacts and the exchanged information will help to achieve new milestones in the rare disease care and to create an active Balkan community of patients and medical professionals.
