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 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 ->>>Access to orphan drugs in Bulgaria
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ICRDOD has published its annual review on the access to orphan medicinal products in Bulgaria. You can find out more on the newly market approved orphan drugs by EMA in 2012-2013 and on their level of reimbu ->>>Cross-Border Healthcare Procedures and National Registry for Rare Diseases
Today, the National Assembly of Bulgaria adopted amendments to the Health Act, transposing the European Directive on cross-border healthcare. According to the adopted amendments, each patient needs to obtain authorisation from the National Health Insurance Fund (NHIF), so that the cross-border treatment he/she receive would be later reimbursed. Health Act further describes cases, in which NHIF may refuse to reimburse cross-border healthcare. NHIF will cover the costs of patients treated abroad only to the amount that is currently reimbursed in Bulgaria . The amendments also establish a National Registry of rare disease patients in the country. For more information, please visit the official site of the National Assembly.
“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 wish for the new 2014 one? The biggest news – the Institute for Rare Diseases is now a fact. What is going on with the health technology assessment in Bulgaria? Rare Diseases Library feautures an extensive review of ataxia teleangiectasia. Season greetings from “Rare Diseases & Orphan Drugs” team”.
Last posts by topic
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MUCOPOLYSACCHARIDOSIS TYPE 2
SYNONIMS: Hunter syndrome, Iduronate 2-sulfatase deficiency ICD10 code: E76.1 ORPHANET number: ORPHA580 For more information about this disease, please visit the Orphanet website. Visitors from North America may also contact NIH ->>>
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4th National Conference for Rare Diseases Book
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). ->>>
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Information seminar on rare diseases in Plovdiv
Information seminar on rare diseases “Rare Diseases – give your hand and touch them” will be held on July 26, 2014 / Saturday / at ->>>
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Aniridia – diagnosis, treatment and rehabilitation
“Aniridia – diagnosis, treatment and rehabilitation” seminar will be held on July 26, 2014 (Saturday) from 9:00 in Plovdiv. The initiative is organized by the ->>>
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2014 Report on the State of the Art of Rare Diseases Activities in Europe
European Union Committee of Experts on Rare Diseases (EUCERD) has annonced the publication of the “2014 Report on the State of the Art of Rare ->>>
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Leaflet on European Reference Networks
The European Commission published an information booklet on European reference networks for rare diseases. The publication contains detailed information on the organization and functioning of ->>>
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5th National Conference for Rare Diseases – keynote speaker
Dr. Stephen Groft from NIH Office of Rare Diseases Research will be the keynote speaker at the 5th National Conference for Rare Diseases and Orphan ->>>
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5th National Conference for Rare Diseases
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 ->>>
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S.T.o.Re Project
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 ->>>
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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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Reimbursement decision-making criteria in Bulgaria
A new review article explores the Bulgarian legislation on health technology assessment (HTA). It analyses how innovative therapies and orphan drugs in particular would respond ->>>
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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 ->>>
