This fall the First European medical students’ congress (EMScon) for Rare Diseases and Orphan Drugs will be held from 6th to 8th of September in Plovdiv. This event aims to enrich the knowledge of the future medical professional and to help them gain experience in the field of rare diseases. Among the topics which will be discussed are advanced methods for prevention, diagnosis, treatment, follow-up and rehabilitation on rare diseases and orphan drugs. For more information, please visit the official website of the event.
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DEBRA Bulgaria is organizing a meeting of patients with Epidermolysis Bullosa on 28-29 June in Sofia. The purpose of the meeting is to provide the patients and their families with the decision of the NHIF to grant free non-stick bandages from July 1, 2014. Attendees will become familiar with the new procedure for receiving them, as well as will learn more about different types of bandages. For more information, please visit the official website of DEBRA Bulgaria.
The 9th ICORD conference “Societal value of Prevention, Diagnosis and Treatments of Rare Diseases” will be held on 7-8 October 2014 in Ede, The Netherlands. The event will be organized in parallel to the Dutch Medicine Days, with both joint sessions and separate ICORD sessions and open workgroup meetings. The 9th of October the programme is dedicated to ICORD only, where a wide range of topics concerning medical, research, political, social, industrial, and economical aspects will be presented. For more information, visit the official website of ICORD, please.
European Reference Network conference will be held on 23 June 2014 in Brussels. It will bring together highly specialised healthcare providers, experts, national authorities, decision–makers, and independent individuals with experience in the assessment and evaluation of healthcare providers. The aim of the event is to discuss the state of the organisation of highly specialised networks and their members across the EU and to look into the next steps of the deployment process, in preparation for the forthcoming call for European Reference Networks in 2015. European Commission will be able to provide coverage for travel and accommodation expenses for a number of participants. That is why the registration is compulsory. For more information, please visit the official website of the European Commission.
Second International Congress “Narrative Medicine and Rare Diseases” will take place on 13 June 2014 in Rome. The event is being organized by the National Centre for Rare Diseases and Italian National Institute of Health. The Congress is addressed to physicians, psychologists, nurses, social workers, educators, lay groups and students and everyone interested in rare diseases and narrative medicine. The official languages will be Italian and English. Participation is free but registration is required. For more information, please visit the official website of the event.
The 5th National Conference for Rare Diseases and Orphan Drugs will be held on 26-27 September 2014 at the Congress Centre of Novotel – Plovdiv. Clinical trials for rare diseases are the main theme of this year’s event. Leading Bulgarian and international experts will present their experience and knowledge on clinical trials for rare diseases.
Nowadays, clinical trials are a fundamental research activity. Their role is essential in answering specific questions on innovative technologies for prevention, diagnosis, treatment, follow up, and rehabilitation of rare diseases. Clinical trials are also closely related to many other advanced concepts in the field of rare diseases, such as centres of expertise, registries and health technology assessment.
You can register and find more information on the conference website – www.conf2014.raredis.org.
International Day of Thalassemia is celebrated every year on May 8 in over 60 countries around the world. International Day of Thalassemia is a possibility many people to understand that blood donation is a vital act of humanity that can save lives. The event also stresses on the possibility of prevention from thalassemia which is entirely possible by doing a simple test. For more information, please visit the official website of the Organization of Thalassemics in Bulgaria .
International Workshop “Rare disease and orphan drug registries” will take place on 24 – 25 November 2014 in Rome, Italy. The event is being organized by the National Centre for Rare Diseases and the Italian National Institute of Health in the framework of the EPIRARE Project. The workshop is open to scientists, clinicians, patient and parent associations, policy makers and enterprises. It will consist of oral presentations, posters and focus group sessions.The main aim of the event is to exchange experiences and presentation of scientific results to foster international collaboration in the field of rare disease registries. For more information, please visit: the official EPIRARE website.
International Summer School “Rare diseases and orphan drug registries” will take place on 15 – 19 September 2014 in Rome, Italy. The event is being organized by the National Centre for Rare Diseases and the Italian National Institute of Health. It is aimed at researchers, clinicians, health authorities, policy makers, academics, all the relevant experts, students and patient organizations, who are involved or intend to establish a rare disease patient registry. During this training the participants will be presented the main concepts and methodological steps that must be undertaken in the establishment and management of such a registry. They will also learn how to ensure its usefulness, scientific soundness and sustainability. For more information, please visit the official website of the event.
World Day of Pulmonary Hypertension is celebrated every year on May 5. Worldwide patients suffering from this disease organize different activities. Their aims are: raising awareness among the society about Pulmonary Hypertension and problems these patients meet; stressing the importance of early diagnosis; promoting access to specific health care and therapies that improve the quality and duration of life; encouraging research that is the key to proper treatment. On May 7, at 14:00 Pulmonary Hypertension Association organizes the event “Take a breath with me”. On the square in front of the Ministry of Health, patients with pulmonary hypertension will celebrate the day by performing simple exercises for the healthy people but costing many efforts for them. For more information, please visit: http://www.worldphday.org