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.
Medical Center “RareDis” will make a donation of 12 000 BGN to the National Alliance of People with Rare Diseases (NAPRD) during the charity campaign “Be in Solidarity, Give Happiness!”. The donation contains 10 individual vouchers, non-cash usable by members of NAHRB at Medical Center “RareDis”. For more information, please contact NAPRD.
Roundtable discussions on the patient organizations’ role as a factor in health policy making will be held on 29 October 2010 (Friday) in Plovdiv in the Regional Administration Office. The organizers are the National Alliance of People with Rare Diseases (NAPRD), Bulgarian Association for Promotion of Education and Science (BAPES) and Italian-Bulgarian Foundation – Plovdiv. Host of the meeting is the governor of Plovdiv Region – Mr. Ivan Totev. Moderators of the roundtable will be Mrs. Mariella Bocciardo, Mr. Vladimir Tomov (NAPRD) and Prof. Rumen Stefanov (BAPES). Mrs. Bocciardo is a member of the Italian Parliament and has a long experience in promoting patient empowerment. Patient organizations, medical professionals, representatives of state institutions and pharmaceutical industry will be invited to attend the meeting.
“Solidarity stand” will be organized during the XVI-th Italian Festival of Beauty and Style which will be held from 28 to 31 October 2010 in Hall 2 of the International Fair Plovdiv. Initiators and organizers of the fashion forum are Christian of Roma Group and Italian-Bulgarian Foundation Plovdiv. The charity initiative is titled “Be in Solidarity, Give Happiness” and all the proceeds will be donated to the National Alliance of People with Rare Diseases.
“Stand in Solidarity, Give Happiness” is under the patronage of the General Consul of Turkey in Plovdiv Mr. Cuneyt Yavuzcan and supported by the Municipality of Plovdiv, Plovdiv District Administration, Honorary Consulate of Italy in Plovdiv, International Fair Plovdiv, representatives of local and international business in Plovdiv.
“Solidarity stand” will work alongside the rest of the fashion show. There will be sold at preferential prices luxury cosmetic products and materials, haute couture dresses provided by participants in the festival, as well as special selections of South African wine and gourmet. At the same time visitors will have the unique opportunity to take an autograph and picture with “solidarity stand consultants” – pop-folk singer Andrea, Eli Kuzmova, winner of the reality show Big Brother Family, Nora Nova and actor Ruslan Maynov.
The Fund for Rare Diseases and Orphan Drugs to the Roi Baudouin Foundation has been mandated by the Ministry of Social Affairs and Health to develop a plan of political action on rare diseases. In response of that, the fund has prepared a document, which contains an initial set of recommendations and proposals of measures to achieve such a programme. There are 11 measures which are expected to be implemented in short term. They are divided into several different policy areas, namely organization of specific clinical skills to improve health outcomes for patients, codification and identification of rare diseases, promoting awareness of the problem, informing stakeholders and empowerment of patients, access to diagnosis, medication, treatment and care of patients.
The Ninth national conference on clinical hematology will take place on 28-30 October 2010 in Novotel – Plovdiv. Organizers are the Bulgarian society of clinical and transfusion hematology, Clinic of hematology and Clinic of oncohematology at “St. George” University hospital in Plovdiv. Multiple myeloma is the main topic of the event. For more information, please click here.
“Rare Diseases Epidemiology” is already available. The book offers numerous approaches to increase the knowledge base of rare diseases and conditions and to facilitate the development and dissemination of interventions for the prevention, diagnosis, or treatment of over 6500 diseases and conditions. “Rare Diseases Epidemiology” provides methods and approaches from the collective experiences of established research investigators who address these significant issues of the development of patient registries; the collection, storage and selected distribution of bio-specimens from bio-banking activities; the validation and utilization of genetic testing and newborn screening procedures; the presentation of issues related to the importance of case reports to increase knowledge of rare diseases; the challenges and models for population-based surveillance studies for rare congenital and inherited disorders; the statistical methods for the geographical analyses of rare diseases; the value and need for clinical trials and comparative effective studies; and meeting the requirements of regulatory agencies.
ICRDOD has contributed by taking part in the preparation of Chapter 26 of the book, “National Plans and Strategies on Rare Diseases in Europe”.
A workshop “Orphan Drugs for Rare Cancers: Proposals for Action at the European Level” was held at the European Parliament on 5 October 2010. It was hosted by MEP Frieda Brepoels. Discussion topics included what can the EU do to improve measuring efficacy of orphan drugs in rare cancers, the importance of cancer registries and e-health for development of and access to orphan drugs and the collaboration between Member States for sustainable and improved access to orphan drugs. For more information, please click here.
First National Congress of Medical Rehabilitation and Occupational Therapy with international participation will be held on 4-6 November 2010 at the Hotel Samokov, Borovets. Organisers are the Department of Physical medicine, rehabilitation, occupational therapy and sport at Medical university of Pleven, Sector of Medical rehabilitation and occupational therapy at Medical university of Sofia and Bulgarian Neurorehabilitation Society. The main themes of the event will include the application and role of medical rehabilitation and occupational therapy in the nervous system disorders, musculoskeletal system disorders, psychological and psychiatric diseases, pediatric diseases, as well as the current trends in this field. For more information, please click here.
On the occasion of the March “For a fair chance to our children”, patient organizations from the National alliance of people with rare diseases have sent a letter to the Bulgarian Prime Minister – Mr. Boyko Borisov. Patients have requested a meeting with him in order to present the problems of people with rare diseases and their families and to look together for ways to solve them. “We are aware that the economic crisis requires saving and budget cuts, but life is equally dear and valuable to anyone” write people with rare diseases to Mr. Borisov. The full text of the letter in Bulgarian can be found here.