4th National Conference for Rare Diseases and Orphan Drugs proceedings book is now published on our website. You can explore all the presentations and posters (in Bulgarian). The e-book can be downloaded from here. The Institute for Rare Diseases would like to thank all conference speakers and participants.
An informational day for Rare Diseases and charity campaign in support of people, suffering from cystic fibrosis, will be organised on April 25 in Haskovo. In the initiative will take part students, patients, their families and medical professionals. The aim of it is to inform society about the problems of people with rare diseases. A seminar on topic “Rare Diseases – known and unknown” will be hold in the same day from 14.00 to 18.00 in Medical College of Haskovo. Lecturers are leading specialists in the field of rare diseases and patient representatives. For more information, please visit: www.rare-bg.com.
World Day of Immunology will be celebrated for the eighth time on April 29. This year focus of the event are vaccines, the application of which prevents the global spreading of infections and epidemics. Days from 22 to 29 April are devoted to Primary Immunodeficiency – rare diseases that concentrate efforts of immunologists, pediatricians, geneticists, pulmonologists, gastroenterologists and hematologists from all around the world. Medical professionals from different University Clinics in Medical University of Plovdiv will take part in the International Week of Primary Immunodeficiency by providing free examinations and consultations on April 28 and 29 from 10 a.m. to 12 a.m.
Happy Easter! We wish you health, colorful mood and good luck!
S.T.o.Re Project, funded by the EC, officially started in August 2013. It aims to understand to what extent and in what ways narrative-based medicine (NBM) can act as a complementary approach to evidence-based medicine (EBM). In particular, the project wants to promote the use of integrated health records, integration of narrative and traditional medicine, improving collaboration between doctors, patients and health authorities, improving the quality of medical services and the adequacy of therapy. Italian National Institute of Health (ISS) is the project coordinator and Information Centre for Rare Diseases and Orphan Drugs is an associate partner. For more information, please visit the official website of the project.
International Day of Pompe disease is celebrated on 15 April every year. Bulgarian Society for Neuromuscular Diseases / BDNMZ / and Bulgarian Association for Neuromuscular disease organize “Open Doors Pompe Day”. The campaign will take place in Sofia, Plovdiv, Stara Zagora and Varna. Patients with symptoms related to Pompe disease can be consulted by a medical professional on 15 April 2014 in Medical center “RareDis” in Plovdiv. For more information, please call: 032/575 797.
The European Parliament voted for new rules for clinical trials conducted in the EU. They aim at restoring the EU’s competitiveness in clinical research and the development of new and innovative treatments and medicines. Among the main rules are: creating a straightforward authorisation procedure allowing for a fast and thorough assessment of the application, simplified reporting procedures for researchers, the possibility for the Commission to conduct controls in EU countries and third countries to make sure the rules are being properly supervised and enforced. The new Regulation is expected to come into effect in mid-2016. For more information, please visit the official website of the EC.
World Health Day is celebrated on 7 April every year to mark the anniversary of the founding of World Health Organisation (WHO) in 1948. Each year a theme is selected that highlights a priority area of public health. The Day provides an opportunity for individuals in every community to get involved in activities that can lead to better health. The topic for 2014 is vector-borne diseases. (picture: WHO, 2014)
The European Commission officially adopted a Third Programme for Action in the Field of Health, which will continue and develop the achievements of the previous health programmes. Priority tasks include facilitating cooperation and exchange of information between stakeholders in Europe, improving the transparency of health care and health care systems, ensuring availability of reliable, independent and user-friendly information for patients, properly targeted investment for health promotion and disease prevention in order to increase life expectancy in good health. For more information visit the official website of the EC, please.
National Alliance of People with Rare Diseases (NAPRD) invites all its members to a meeting. The event will take place on 05.04.2014 at Park Hotel “Moskow” in Sofia. Among the topics of discussion are developments in law, concerning rare diseases, current problems of patient organizations, report on the activity of the Alliance for 2013. For more information contact Mr. Vladimir Tomov (0878 323 748), please.