The First National Conference on Rare Diseases and Orphan Drugs will be held on 28-30 May 2010 in Plovdiv, Bulgaria. An EUROPLAN Project workshop will be organized during the event too. It will take place at the Congress centre of NOVOTEL – Plovdiv. More detailed information will be given soon.

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.

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.

We are sorry to inform you that the planned charity concert on 3 December 2009 will not be held due to organizational problems.

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. The materials are provided by Mr. Stanimir Tsonev (president of the Bulgarian PWS patient association).

A new section – Registries and Statistics has been added to our site. You can find there actual epidemiological data about the rare diseases in Bulgaria and EU and lists of orphan drugs with market authorization.

On 3 December 2009, Christmas charity concert will take place at Pavilion 3 of the Plovdiv International Fair from 19 o'clock. The event is organized by the HAE patients association and the National alliance of people with rare diseases and is under the auspices of the First Lady of Bulgaria – Mrs. Zorka Parvanova. The noble cause is supported by many famous artists, including Desi Slava and Respect. ”Give me a hand, together we can help!” is the official slogan. You can help too, come to the concert!