The Scientific Secretariat of the European Union Committee of Experts on Rare Diseases (EUCERD) has annonced the publication of the “2011 Report on the State of the Art of Rare Diseases Activities in Europe”. This report covers activities up to the end of 2010. The issue is composed of 3 parts which are now available via the EUCERD website (www.eucerd.eu) – Part I: Overview of Rare Disease Activities in Europe and Key Developments in 2010; Part II: European Commission and European activities; Part III: Activities in European Member States and other European countries.
Association Cystic Fibrosis is holding its annual assembly on 23 July 2011 from 10.30 a.m. at the Auditorium of Pediatrics Clinic at Alexandrovska University Hospital (Sofia). Medical specialists, health authorities representatives and media are invited to attend the meeting too. A special accent will be put on the European standard for treatment and follow-up of cystic fibrosis patients, which is not adopted yet in Bulgaria. For further information, please visit Association Cystic Fibrosis website.
The new issue of BAPES official newsletter is now published. The highlights include presentation of the Association of Medical Students of Plovdiv (ASM-Plovdiv) and their role in rare diseases activities in Bulgaria, as well as the preliminary programme of the Second National Conference for Rare Diseases. In “Rare diseases library” you can find an updated review on multiple sclerosis.
In 2010 a joint project of BAPES and the Bulgarian Society of Gastroenterology, Gastrointestinal Endoscopy and Abdominal Echography on National registry of Crohn disease patients has been officially started. In October 2010 a pilot study collected epidemiological information for 109 patients. These results were discussed on a meeting of the gastroenterology expert board in June 2011. The National registry itself will start later this year by collecting epidemiological data from all over Bulgaria. To see the results of the project so far, please check “Registries and Statistics” section of our website.
First National Neurorehabilitation Congress with international participation will take place on 27-29 October 2011 at Interhotel in Veliko Tarnovo. The event is organized by the Bulgarian Society of Neurorehabilitation. Congress topics include advanced neurorehabilitation methods, neuro-muscular diseases rehabilitation, multidisciplinary neurehabilitation team. For further information, please read the congress brochure.
The preliminary programme of the Second National Conference for Rare Diseases and Orphan Drugs is now available. Visit www.conf2011.raredis.org regularly and stay tuned to all news and updates concerning this important scientific event. We would like to remind you that the deadline for the early registration is 15 June 2011.
A charity bazaar under this motto will be organized on 1 June (International Children’s Day) by Association “Cystic Fibrosis”. It will take place in Plovdiv on Stefan Stambolov Square from 9 a.m. to 20 p.m. Interesting and attractive objects, made by hand by children and friends from across Bulgaria will be offered for sell. The event will be accompanied by an entertainment programme from 17 p.m. Children will be surprised with a kids discotheque, as well as a separate area for drawing and painting on plaster figurines will be set all over the day. For more information, please contact Ms. Svetlana Atanasova (secretary-coordinator of Association “Cystic Fibrosis”, +359 899 850 441 ) or visit the patient associations’s website.
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