The Bulgarian National chronic myeloid leukemia (CML) patients registry was started in November 2010 by concluding the first epidemiological study of CML patients. This project is implemented jointly with the Bulgarian Scientific Society of Clinical and Transfusion Hematology and Medical Center “RareDis”. After processing the information a total of 248 CML patients was registred. The proportion of men is 50.40% (125 patients), while that of women is 49.60% (123 patients). Standardized annual prevalence is 3.27 per 100 000 people. The average age of registered patients is 53.86 ± 15.33 years. At the time of the study, patients were treated and followed up in eight hospitals in the country, primarily in university hospitals: 2 centres in Sofia – National Hematology Hospital with 78 (31.50%) patients and “Alexandrovska” University Hospital with registered 29 (11.60%) patients, Plovdiv – 56 patients (22.60%), Varna – 48 patients (19.40%), Pleven – 27 patients (10.90%), Ruse – 5 patients (2.00%), Haskovo – 4 patients (1.60% ) and Vidin – 1 patient (0.60%). Patients from Ruse, Vidin and Haskovo receive medicinal therapy at the university clinics and are followed up by a hematologist in their home town. An update of the information on registered patients with CML, as well as registration of new cases will be held in 2011.
December 2010
The second phase of the project “National registry of patients with thalassemia major in Bulgaria” was successfully completed in October 2010. The aim was to update the information on patients who were registered during the first phase of the project and to register newly diagnosed and not yet registered patients with thalassemia major. A total of 241 questionnaires (18 for primary epidemiological information about newly diagnosed patients and 223 for data update) was collected with the active assistance of medical specialists from blood transfusion centers and thalassemia patient association. After statistical processing of the submitted data, it was found that the number of men is 126 (52.28%) and 115 (47.72%) for women respectively. The average age of patients with thalassemia major is 19.5 ± 11.9 years. Their treatment is conducted in 12 hospitals in the country and chelation therapy takes place in the blood transfusion specialized centers (Sofia – three centers, Plovdiv – two centers, Varna, Stara Zagora, Pleven, Burgas, Ruse, Yambol and Silistra). These results were discussed and adopted as official for the country at a workshop of the Expert group on thalassemia, held in Varna in November. A subsequent update and collection of new epidemiological data in will be organized in March-April 2011.
Newsletter
RARE DISEASES AND ORPHAN DRUGS
Official Newsletter of BAPES
2010 Official Newsletter of BAPES 2010 Description:
Description: ————————————————————————— SYNONIMS: Hepatolenticular degeneration ICD10 code: E83.0 ORPHANET number: ORPHA905 For more information about this disease, please visit the Orphanet website. RARE DISEASES LIBRARY: You may find a detailed description of Wilson disease in Issue 5 of “Rare Diseases & Orphan Drugs”. Click here to open the pdf-file (file size 690 KB). You can subscribe for our free e-newsletter by entering your e-mail here. ————————————————————————— SYNONIMS: – ICD10 code: Q87.8 ORPHANET number: ORPHA904 For more information about this disease, please visit the Orphanet website. ————————————————————————— SYNONIMS: Intestinal lipodystrophy ICD10 code: K90.8, M14.8 ORPHANET number: ORPHA3452 For more information about this disease, please visit the . —————————————————————————
· Issue 1, year I (please, click to open it as a pdf file, size 1.74 MB)
· Issue 3, year II (please, click
· Issue 1, year I (please, click
EUROPLAN National Conference for Rare Diseases took place on 28-30 May 2010 in Plovdiv and received huge interest from medical professionals and patients (300 participants), official guests from EURORDIS and leading foreign experts on rare diseases were also present. The event was jointly organized by ICRDOD and NAPRD. During the conference the Bulgarian National Plan for Rare Diseases (2009-2013) and EUROPLAN recommendations for effective rare diseases strategies were officially presented to the Bulgarian rare diseases stakeholders. The results from the first Bulgarian epidemiological registry for rare diseases, the one of patients with thalassemia, were also made public during the event.
The Fifth Eastern European Conference for Rare Diseases and Orphan Drugs “Rare Diseases in the Focus of Personalized Medicine” was organized together by BAPES and of the event
Last modification: 10:54 07.10.2010
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Visitors from North America may also contact NIH Office of Rare Diseases Research website.
Last modification: 13:49 18.08.2010
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Visitors from North America may also contact NIH Office of Rare Diseases Research website.
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