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Patient Empowerment in Rare Diseases Slovak Rare Disease Alliance − Contribution to the Creation of the National Plan of Rare Diseases in Slovakia Eurordis – Benefits of Membership / Pacientske organizácie v oblasti zriedkavých chorôb – ich činnosť aj pri príprave národného plánu v SR slovenská aliancia zriedkavých chorôb Eurordis - európska aliancia zriedkavých chorôb – výhody členstva

://www.eurordis.org/content/europlan-guidance-national-plans-andconferences). Accessed April 20 2013. EURORDIS. EURORDIS Rare Diseases Europe: The voice of of Rare Disease Patients in Europe [online]. European Union's Health Programme, 2009, 10/01/2013. (http://www.eurordis.org/). Accessed April 20 2013.

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The Creation Of The National Registry Of Rare Diseases In The Slovak Republic

References [1] Aymé S. and Rodwell Ch. The European Union Committee of Experts on Rare Diseases: Three Productive Years at the Service of the Rare Disease Community. Orphanet Journal of Rare Diseases 2014 9:30 [2] Gliklich RE, Dreyer NA, et al. Registries for Evaluating Patient Outcomes: A User’s Guide. 2nd ed. (AHRQ, September 2010)). [3] Registries under NCHI. [online] Bratislava, National Centre of Health Information [last access verified 20/2/2013]. Accessible at: http

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Selected Issues of Legislation with regard to Operating Pharmacies in the Slovak Republic / Vybrané problémy právnej úpravy prevádzkovania lekární v podmienkach Slovenskej republiky

Abstract

Among the basic rights and freedoms, stipulated in the Constitution of the Slovak Republic, are right to protection of health, free medical care based on health insurance, right to medical aids under conditions stipulated by law. These rights are guaranteed through provisions of Art. 40 of the Constitution of the Slovak Republic as part of Economic, Social and Cultural Rights and they apply to every individual. Since these rights are considered to be human rights under the international law, they are guaranteed by multilateral treaties in which Slovak Republic is a signatory, such as International Covenant on Economic, Social and Cultural Rights.

Legal regulation of operating pharmacies in the Slovak Republic covers a broad scope of issues and is quite extensive. Through concerted legislative effort, the legislator had tried to set rules that would make the legal environment in this sector more transparent and easier to navigate through. In some areas, the rules were set by the legislature of the European Union (EU) and the Slovak legislature only adapted them. The most important aspect of legal regulation in this sphere that is not completely regulated by the EU legislature is providing pharmaceutical care and usage of the public health insurance system with regard to providing pharmaceutical care.

The main aim of this study is to point out select issues that are associated with the position of a pharmacy operator and obligations stipulated in the Medicines Act 2011 that must be observed and incorporated into the running of a pharmacy. This area of business is fairly strictly regulated and therefore it is necessary to get acquainted with the relevant legislation. The study addresses several issues regulated by the Medicines Act 2011 or the Appropriate Pharmaceutical Practice Regulation 2012 from the legal-theoretical perspective.

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Off-label drug use among hospitalized children: identifying extent and nature

products for paediatric use and amending Regulation (EEC) No 1768/92, Directive 2001/20/EC, Directive 2001/83/EC and Regulation (EC) No 726/2004. Official Journal of the European Union 49. Available at: http://eurlex.europa.eu/ Report on survey of all paediatric uses of medicinal products in Europe. EMA/794083/2009, 2011:1-37. T Jong GW, Vulto AG, De Hoog M, Schimmel KJM, Tibboel D, Van Den Anker J. A survey of the use of off-label and unlicensed drugs in a Dutch children's hospital. Paediatrics. 2001;108:1089-1093.

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Restriction on the re-export of medicinal products and the supervision of compliance with it by public administration bodies

[8] Mrva M et al. Legisvakancia v právnom poriadku Slovenskej republiky. Bratislava, Univerzita Komenského v Bratislave; 2009 [9] Mucha B et al. Podnikateľské prostredie na Slovensku so zameraním na malé a stredné podniky. Paper presented at: 9. Mezinárodní vědecká konference dotorandů a mladých vědeckých pracovníků; November 10, 2016; Opava, ČR [10] Nováčková D, Milošovičová P. Medzinárodné ekonomické právo. Bratislava, Eurounion; 2011 [11] Peráček T et al. Free movement of goods (pharmaceuticals) in the European Union versus protection of health of

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Deciphering nifedipine in vivo delivery from modified release dosage forms: Identification of food effect

, Utilizing in vitro and PBPK tools to link ADME characteristics to plasma profiles: Case example nifedipine immediate release formulation, J. Pharm. Sci. 102 (2013) 3205-3219; DOI: 10.1002/jps.23611. 14. B. S. Schug, E. Brendel, D. Wolf, M. Wonnemann, M. Wargenau and H. H. Blume, Formulationdependent food effects demonstrated for nifedipine modified-release preparations marketed in the European Union, Eur. J. Pharm. Sci. 15 (2002) 279-285; DOI: 10.1016/S0928-0987(02)00008-8. 15. M. Wonnemann, B. Schug, K. Schmücker, E. Brendel, P. A. van

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Practice implications and recommendations for managing codeine misuse and dependence

. Casati, R. Sedefov and T. Pfeiffer-Gerschel, Misuse of medicines in the European Union: A systematic review of the literature, Eur. Addict. Res. 18 (2012) 228-245; DOI: 10.1159/000337028. 8. K. H. Wang, W. Becker and D. A. Fiellin, Prevalence and correlates for nonmedical use of prescription opioids among urban and rural residents, Drug Alc. Depend. 127 (2013) 156-162; DOI: 10.1016/j. drugalcdep.2012.06.027. 9. M. C. Van Hout, Kitchen chemistry: A scoping review of the diversionary use of pharmaceuticals for non-medicinal use and home

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Experience of exercise in people with severe haemophilia: A qualitative study

Abstract

The benefits of regular activity and exercise are well established, yet a third of the population of the European Union does not achieve the recommended levels of activity. For patients with haemophilia, some activity can cause bleeding into joints, leading to potential joint damage, whereas other activities can protect the joint from bleeds and further destruction. This study investigates the understanding and experience of exercise and activity in people with haemophilia (PWH). We conducted semi-structured interviews with six men with severe haemophilia using a consecutive sampling framework and Interpretative Phenomenological Analysis (IPA). We identified five themes: • “I don’t think about haemophilia, I’ve just got to deal with it” A level of acceptance of awareness of their condition, but they do not want it to rule their lives. • “I don’t let my limitations hold me back” Striving to find activities they can participate in, despite joint impairment. • ”The worst thing anyone can do is stop being active” Belief that activity helps to strengthen joints, gives confidence and improves both body and mind. • ”The best thing they did was to not wrap me up in cotton wool” Knowledge of haemophilia, how to treat and recognise bleeds, and finding activities to suit their bodies. • “Time constraints at home” Common barriers to exercise, as in the general population. Our findings provide clinicians with insight into understanding the barriers to exercise and activity in men with severe haemophilia. This can help clinicians to offer the most appropriate support and allow PWH to find an activity or exercise that suits them. Our findings demonstrate that even those with severe haemophilia wish to remain active and do not want to let their limitations prevent them from exercising. Findings also indicate that being given the education and freedom to make independent decisions about exercise and activities are valued. This suggests that clinicians need to provide a therapeutic environment where their patients can feel safe to make sensible choices about types and level of activity.

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Use of internet as source of medical information and its impact among young Transylvanian Hungarian people - a comparative study

Irodalom 1. Internet Word Stats. Usage and Population Statistics [Internet]. Scotland: Miniwatt Marketing Group; 2018 Feb. Available from: http://www.internetworldstats.com/stats.htm 2. Statistical office of the European Union. Internet access and use statistics – households and individuals[Internet]. Luxembourg: Eurostat; 2018 Feb. Available from: http://www.ec.europa.eu/eurostat 3. Baumann E, Czerwinski F, Reifegerste D. Gender-Specific Determinants and Patterns of Online Health Information Seeking: Results From a Representative German

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Work Ability of Machinery Manufacturing Employees

References 1. Ilmarinen J, von Bonsdorff M. Work Ability. In: Wiley J, Sons, editors. The encyclopedia of adulthood and aging. Hoboken: Wiley- Blackwell; 2007. p. 1-5. 2. Ilmarinen J. Towards a longer worklife! Ageing and the quality of worklife in the European Union. Helsinki: Finnish Institute of Occupational Health, Ministry of Social Affairs and Health; 2005. 3. Gould R, Ilmarinen J, Järvisalo J, Koskinen S, editors. Dimensions of work ability - results of the Health 2000 Survey. Helsinki: Finnish Centre for Pensions, The Social Insurance

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