Conference proceedings book
3rd 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). ICRDOD would like to thank all the speakers and participants once again!
4th National Conference for Rare Diseases
The 4th National Conference for Rare Diseases and Orphan Drugs will be held on 13-14 September 2013 at the Congress Centre of Novotel – Plovdiv. The EU Directive on Cross-Border Healthcare and its requirements for rare diseases will be the main topic of the event. How will the Directive affect the access of patients with rare diseases to diagnostic and therapeutic interventions? What conditions will the future centres of expertise for rare diseases need to meet? Will there be networks of these centres in Bulgaria? What new opportunities will be available to both physicians and patients? These are just some of the questions whose answers will be discussed during the event. You can register and find more information on the conference website R ->>>“Rare Diseases & Orphan Drugs” – issue 16
June edition of “Rare Diseases & Orphan Drugs” is now published on our website. It is introducing “Cystic Fibrosis – Let’s Add Life” – a campaign of the Bulgarian Cystic Fibrosis Patient Association for the adoption and implementation in Bulgaria of the so-called European consensus standard for the treatment of this rare disease. You can find more over about the European project BURQOL-RD, that aims assessing the socio-economic burden and health-related quality of life in patients with rare diseases, as well as you can read useful information about hereditary spastic paraplegia. Have nice minutes with “Rare Diseases & Orphan Drugs”.
Rare Diseases and Orphan Drugs Journal
We are glad to announce the Rare Diseases and Orphan Drugs Journal (RARE Journal), which is a new international open access, online, peer-reviewed journal published three times per year, with no publishing fees. RARE Journal is produced within the framework of RARE-Bestpractices project, which is funded by the EU Seventh Framework Programme. The mission of RARE Journal is to provide an advanced forum on important aspects of public health, health policy and clinical research in ways that will improve health care and outcomes for persons suffering from rare diseases, as well as globally increase rare diseases experience sharing. RARE Journal serves the international rare diseases community by publishing high-quality articles from epidemiology, public h ->>>“Rare Diseases & Orphan Drugs” – issue 17
Issue 17 of “Rare Diseases & Orphan Drugs” is already available on our website. The edition is introducing the Association of the Medical Students in Bulgaria, its contribution to the rare diseases’ cause in our country and the upcoming 1st National Conference on Rare Diseases for Medical Students. In the newest issue of “Rare Diseases & Orphan Drugs” you will learn about the latest scientific journal in this field – the RARE Journal. How EUCERD completed its mandate and what is going with the implementation of the European cystic fibrosis standard are among the other interesting news.
Last posts by topic
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Merry Christmas and Happy New Year!
Institute for Rare Diseases wishes you a Merry Christmas and a Happy 2014 New Year!
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“Rare Diseases & Orphan Drugs” – issue 18
Issue 18 of “Rare Diseases & Orphan Drugs” is already available on our website. What the past 2013 year has brought to us and what we ->>>
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Training Workshop for Patients with Cystic Fibrosis
Malnutrition is a serious problem for children with cystic fibrosis. It affects both quality and expectancy of life. CF patients and their parents are invited ->>>
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Meeting of Patients with Osteogenesis Imperfecta
Osteogenesis imperfecta is a congenital hereditary disease characterized by bone fragility. The clinical picture varies from very mild to lethal forms occurring in the perinatal ->>>
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Public Consultation on the European Reference Networks
DG Health & Consumers has announced the outcomes of the public consultation on the criteria to be considered according to Article 12 of the EU ->>>
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International Summer School on Rare Diseases
The Italian National Centre for Rare Diseases is organising an international summer school on rare disease and orphan drug registries. The course will take the ->>>
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Applied Aspects of Health Technology Assessment
The Institute for Rare Diseases and the Faculty of Public Health at the Medical University of Plovdiv are hosting a second HTA Training Workshop, which ->>>
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Public Lecture and Training Workshop on HTA
A public lecture and discussion on “Health Technology Assessment (HTA) and Prospects for Bulgaria” will be held on October 4, 2013 (Friday), from 15.30 in ->>>
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European Project BURQOL-RD – final results
The EU-funded BURQOL-RD Project is now officially finalised. The main aim of BURQOL-RD was to generate a model to quantify the socio-economic costs and Health ->>>
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National Registry of Patients with Neuroendocrine Tumors
National registry of patients with neuroendocrine tumors in Bulgaria is a joint project of BAPES and the Bulgarian Surgical Society. Primary epidemiological data for the ->>>
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Post-marketing access to orphan drugs
A new review article explores the current rationale of post-marketing access to orphan drugs, focusing on health technology assessment (HTA) and reimbursement decision-making considerations. An ->>>
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Cystic Fibrosis – Let’s Add Life
Since three years we have been holding discussions with representatives of the Ministry of Health that the adoption of a cystic fibrosis treatment standard based ->>>
