The following is a case recurrence of epulis gigantocellularis. Patient complaints are for bleeding, soreness, and inconvenience in eating and speaking. An exophyte formation is founded that is excised without engaging tooth extraction. The recurrence that follows has been over come after the excision and extractions of the teeth in the neighborhood ensuring a calm operative field. For more information click here.
Dynamic development and rapid deployment of health technologies, as well as the increasing speed of information flow are the main characteristic that shape the environment of HTA capacity building and institutionalization. The international survey on HTA was designed to gain information about the present status of HTA activities; to examine its institutional contexts and the kind of application of its principles, logic, methods and tools; and to design a theoretical framework for capacity building and institutionalization of HTA practices. The HTA organization is not an autonomous object; on the contrary, its establishment, existence, activity and final results are totally dependent on the external environment of the organization. The model we are presenting is not an algorithm for building an HTA organization but is a dynamic framework that integrates the three interrelated – macro, meso and micro levels. By applying iterative and recursive processes, it is possible to achieve balance, synergy and harmonization of activities and fitting the requirement of all three levels. For more informaton click here.
Renal Tubular Acidosis (RTA) is a disease associated with the accumulation of uric acid in the body due to the kidney’s inability to filter urine. It can be two forms – primary and secondary (acquired). The most common form of primary RTA among children is Distal Renal Tubular Acidosis. It causes characteristic oral changes – the teeth have imperfect amelogenesis. For more information click here.
For the lack of appropriate standards in Bulgaria devoted to the treatment of children with congenital facial anomalies (CFA), there are different problems related to family, society, and specialists: early prenatal diagnosis; prevention of abandonment of children with CFA; clinical protocol to coordinate the work of the specialists; only Surgical Treatment is paid by National Health Insurance Fund (NHIF); social stigma of patients with CFA. Hence, professionals from different European countries, including Bulgaria, ratified CEN/TR 16824:2015 „Early care services for babies with cleft lip and palate“of the European Committee of the Standardization in 2015. On the basis of this document, a Bulgarian analogue was issued to help families in need, aligning the criteria for assessment of clinicians, and opportunities for international cooperation to support and achieve sustainable outcomes. For more information click here.
Dandy-Walker (DW) malformation is a rare and severe congenital anomaly of the posterior fossa affecting the development of the cerebellum and the fourth ventricle. The aim of this study was to investigate the epidemiology of DW malformation, using data from the European population-based registries of congenital anomalies in the European Surveillance of Congenital Anomalies network. Anonymous individual data on cases of DW malformation diagnosed in 2002-2015 from 28 registries in 17 countries were included. Prevalence, prenatal detection rate, proportions and types of associated anomalies were estimated. Cases of DW variant were considered and analysed separately. This European population-based study provides the epidemiological profile of DW malformation. All birth outcomes were analysed and TOPFA represented more than half of the cases. About 50% of the cases of DW malformation were associated with other non-cerebral anomalies. Large populations and all birth outcomes are essential in epidemiological studies of rare and severe congenital anomalies. For more information click here.
The access to innovative health technologies remains a main point for debate in the contemporary health policy. Finding a solution that is mutually beneficial for everyone can be extremely complicated, even impossible in certain cases. Recently, interest in regulatory practice has been the ability to enforce compulsory licensing in the pharmaceutical industry. This legal option, or rather the threat of using it, may play a role in negotiating access to new therapies. At the same time, however, it is an extreme measure with many unknown long-term consequences for the health sector and society. For more information click here.
The aim of this study is to perform a clinical and economic evaluation of pasireotide for patients with Cushing’s disease and acromegaly from the Bulgarian health insurance system point of view. A systematic review in internet-based databases for pasireotide efficacy and safety studies was performed. A top-down approach was applied to identify the medicines costs paid by the National Health Insurance Fund (NHIF) for the period 2016-2018. The costs were compared using statistical software MedCalc and extrapolated for the next 3 years applying linear functions. Mann-Whitney test for independent samples was applied for testing statistically significant differences. For more information click here.
Acromegaly is a progressive rare disease associated with excessive growth hormone production. Described by progressive somatic disfigurement (mainly including the face and extremities) and causing multi-systemic arrangements. People with this disease are at risk of severe disability and life-threatening health problems. Acromegaly is a treacherous chronic disease that occurs with increased morbidity and mortality from cardiovascular, metabolic and neoplastic complications. Disease control can easily be assessed with modern clinical and laboratory methods, but the patient’s self-assessment of Wellbeing and Quality of Life is paramount. Although acromegaly is a rare disease, the burden on Health-related Quality of Life (HRQoL) is significant due to the wide range of concomitant complication and the need for lifelong management. The purpose of this review is to present actual data on the epidemiology of acromegaly and the impact of the disease on the Quality of Life of patients. For more information click here.
The new issue of our scientific journal Rare Diseases and Orphan Drugs is now online. The issue contains 9 publications on various topics. The editorial is “Do compulsory licenses have a place in the debate on access to innovative therapies?” If you would like to receive the latest information on rare diseases and orphan drugs, how the diagnostics and treatment is performed Bulgaria, please follow the link.
Created under the 2011 Directive on Patient Rights’ in Cross-Border Healthcare, European Reference Networks (ERNs) are cross-border networks bringing together centres of expertise and reference centres of European hospitals to tackle rare or low prevalence and complex diseases and conditions that require highly specialised healthcare. ERNs enable specialists in Europe to share learnings and discuss complex patient cases, providing advice on the most appropriate diagnosis and the best treatment. A key principle of ERNs is to let the knowledge travel rather than the patient leading to economies of scale and more efficient use of costly resources. 24 ERNs covering all major rare disease groups were launched in March 2017, including 956 highly specialised healthcare units from 313 hospitals located in 26 countries (25 EU Member States plus Norway). Each Network has a Coordinator and the 24 of them are gathered within the ERN Coordinators group (ERN-CG) establishing a common ground on several key technical and organisational aspects of the Networks activities. The Board of Member States (BoMS), as laid out in the European Commission Implementing Decision was set up on 5 February 2014, and consist of the EU Member states and Norway. One of the tasks of the BoMS include the approval of healthcare providers wishing to join existing Networks. For more information and how to apply click here.