New practical guides for parents of children with Prader-Willi syndrome are published on the Bulgarian PWS patient association’s webpage. To read them, please, click here. Please, note that they are only available in Bulgarian. All the materials are courtesy of the International association of patients with Prader-Willi syndrome and have been translated in Bulgarian by collaborators of the Pediatric endocrinology clinic of Varna.
On February 28 a prayer service will be held at St. Marina Orthodox Church in Plovdiv as part of the events for Rare Diseases Day 2010. Organiser is the National Alliance of People with Rare Diseases with the support of the Information Centre for Rare Diseases and Orphan Drugs.
The National Alliance of People with Rare Diseases and patient associations in Bulgaria will be once more actively involved in this year’s events on the occasion of the Rare Disease Day. On 25 February, a press conference will take place at the BTA with the participation of patient representatives. On 28 February, a charity concert will be held in Plovdiv under the patronage of Bulgaria’s First Lady – Mrs. Zorka Parvanova. The event will start from 16 o’clock at the National Army Hall. Special guests include Nikolina Chakardakova and the Nevrokop Dance Ensemble, Orhan Murad, “Detska Kitka” Children Choir, “Era” Ballet. On 28 February, stands in major cities (Sofia, Plovdiv, Varna, Pleven) will be organized, where patients and volunteers will distribute rare diseases information leaflets.
Rare Disease Day 2010 will be officially celebrated on 28 February 2010. European patient platform EURORDIS launched this initiative in 2008 to acquaint the European society with the problem, called “rare disease”. A term that is accompanied by delays in diagnosis, insufficient information and lack of treatment. A reality for more than 25 million Europeans, the vast majority of whom are children. These people are particularly isolated and vulnerable as their condition is seriously endangering their lives or leading to a chronic progressive disability with high complexity. This year the day will pass under the slogan “Patients and Researchers – Partners for Life” and will be celebrated in over 30 countries (EU, USA, China, Japan, Canada, Australia and Brazil). Organizers for Bulgaria are the National Alliance of People with Rare Diseases and the Information Center for Rare Diseases and Orphan Drugs.
National Syringomyelia Association is now officially registered. Mrs. Ginka Kolchakova has been elected chairwoman of the governing board of the association. For more information – click here.
On 28 October 2009, BAPES was officially given the status of data privacy administrator of rare diseases registries by the Commission for Protection of Data Privacy. After that, the collection of epidemiological data for the project “National registry of thalassaemia major patients in Bulgaria” started. Initial information shows that by January 2010 there are 208 thalassaemia major patients in Bulgaria, who are treated in seven centres – Sofia (95), Plovdiv (36), Varna (26), Burgas (14), Stara Zagora (19), Pleven (18). Currently, the data is been analyzed and the results will be published in March 2010. The project is implemented as a result of the common work and cooperation between BAPES, ICRDOD, Medical Centre „RareDis“, Bulgarian Scientific Society of Clinical and Transfusion Hematology and regional transfusion hematology centres in Bulgaria. Its main purpose is to create an epidemiological tool for identifying and tracking each patient. The registry will help doctors, researchers and health authorities to determine prevalence, morbidity, long-term outcomes and quality of life of the Bulgarian patients with thalassemia major. Moreover, this experience can be used as a model for creation of registries for other rare diseases.
On 28 October 2009, BAPES was officially given the status of data privacy administrator of rare diseases registries by the Commission for Protection of Data Privacy. After that, the collection of epidemiological data for the project “National registry of thalassaemia major patients in Bulgaria” started. Initial information shows that by January 2010 there are 208 thalassaemia major patients in Bulgaria, who are treated in seven centres – Sofia (95), Plovdiv (36), Varna (26), Burgas (14), Stara Zagora (19), Pleven (18). Currently, the data is been analyzed and the results will be published in March 2010. The project is implemented as a result of the common work and cooperation between BAPES, ICRDOD, Medical Centre „RareDis“, Bulgarian Scientific Society of Clinical and Transfusion Hematology and regional transfusion hematology centres in Bulgaria. Its main purpose is to create an epidemiological tool for identifying and tracking each patient. The registry will help doctors, researchers and health authorities to determine prevalence, morbidity, long-term outcomes and quality of life of the Bulgarian patients with thalassemia major. Moreover, this experience can be used as a model for creation of registries for other rare diseases.
The FAQ section of the ICRDOD website has been updated. Basic definitions and guidelines about the rare diseases have been added to it. For more information – click here.
On 28 November 2009, Mr. Vladimir Tomov was elected chairman of the biggest patient association in Bulgaria – the Confederation for Health Protection. ICRDOD congratulates Mr. Tomov and wishes him a successful and fruitful work in defending the rights of patients in Bulgaria.
The Fifth Eastern European Conference for Rare Diseases and Orphan Drugs “Rare Diseases in the Focus of Personalized Medicine” and the First All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “The Road of Life” will take place in Saint-Petersburg, Russia on 1-3 July 2010. The conference will bring together leading scientists, practicing doctors, patients and representatives of the patient organizations from Russia, Europe and the CIS, European alliances CEEGN and EURORDIS. Prof. Alexey Sokolov (Russia), Prof. Rumen Stefanov (Bulgaria), Mr. Vladimir Tomov (Bulgaria) and Ms. Svetlana Karimova (Russia) are the co-chairpersons of the organizing committee. For more information, please contact the organizers (e-mail nacgenetic@mail.ru). Further details will be published soon.