Andrea Brajković, Iva Mucalo, Toni Vidović, Mariana Martins Gonzaga, Do Nascimento, Antonija Balenović, Ino Protrka and Djenane Ramalho De Oliveira
1. T. McInnis, L. Strand and C. E. Webb, Integrating Comprehensive Medication Management to Optimize Patient Outcomes, Resour. Guid. (2012) A-26.
2. Institute of Medicine, Informing the Future: Critical Issues in Health: Fourth Edition , The National Academies Press, Washington DC 2007; https://doi.org/10.17226/12014
3. OECD/EU, Health at a Glance: Europe 2018: State of Health in the EU Cycle , OECD Publishing, Paris/EU, Brussels 2018; https://doi.org/10.1787/health_glance_eur-2018-en
4. World Health Organization
. Cromwell and J. Jerkins, Integration of QbD risk assessment tools and overall risk management, Biologicals 44 (2016) 341–351; https://doi.org/10.1016/j.biologicals.2016.06.001
16. P. K. Sahu, N. R. Ramisetti, T. Cecchi, S. Swain, C. S. Patro and J. Panda, An overview of experimental designs in HPLC method development and validation, J. Pharm. Biomed. Anal. 147 (2018) 590–611; https://doi.org/10.1016/j.jpba.2017.05.006
17. M. de Matas, T. De Beer, S. Folestad, J. Ketolainen, H. Lindén, J. A. Lopes, W. Oostra, M. Weimer, P. Öhrngren and J. Rantanen
After the endorsement of the National strategy of rare disease patient health care development for years 2012 - 2013 by the government of the SR on October 24, 2012, it is important for all participants in the process to get involved. (Who are all the participants? - doctors, pharmacists, scientist, national authorities, regulators, health insurance companies, social insurance company, health care and social workers, pharmaceutical industry, but also politicians, patients and patient organizations)
Based on the experience and problems which are being solved by patients, it is necessary for POs to focus on areas important for the creation of NP RD in the SR. These are most of all: complex approach to patients based on a multidisciplinary team, inclusion of patients into decision making - an educated patient is a prerequisite for this; specialized services for RD patients and their families; integration of RD patients into existing health care and social system and help lines.
Slovak Alliance of Rare Diseases (Alliance RD) was founded and registered at the Ministry of Interior of the SR on December 12, 2011. The reason for its foundation was the effort to solve problems in the area of RDs in a complex and systemic way, which is proved by its involvement in the creation of NP RD in the SR. It houses 12 POs working in the field of RD in Slovakia. The objective of the Alliance RD is to keep improving the health and social life conditions of rare disease patients and their families, to improve the quality of rare disease patients’ lives, and to support their social integration. In close cooperation with EURORDIS - Rare Disease Europe − it took part in EUROPLAN II (2012 - 2015), a project organized by the National conference for the support of the creation of National plan of rare disease patient health care development in Slovakia.
Organization of Muscular Dystrophy in the Slovak Republic (OMD in SR) is the only specific organization in Slovakia which associates children and adults with muscular dystrophy and other types of neuromuscular diseases (hereafter only NMD) and their families. The organization was founded as an independent public association in 1993. It has been providing social counselling and other specialized social services for its members and clients. In its early years, it performed the community service and nonprofit activities on a voluntary basis; today, a professional team of nine takes part in its activities, seven of which are people with extensive disability, plus two assistants. This change could take place thanks to having obtained the status of a protected workplace in 2009. In accordance with EURORDIS recommendations, OMD in SR takes care of activities in 3 different areas: information services and help line, therapeutic recreational programmes, and respite care services.
As a part of the information service, it provides specialized social counselling for disabled people via phone, email, in person or in the field − at a patient’s place. The organization also publishes its own quality magazine Ozvena (ECHO), which is distributed free-of-charge to all members four times a year. People with NMD are involved in the creation of the magazine from the position of experts and patients. The organization is particularly devoted to Recreational activities the camps for children with NMD, especially boys with Duchenne muscular dystrophy. Activities organized every year include also integrative national meetings of members. The group of relief services includes providing specialized social services in the Personal Assistance Services Agency founded under OMD in SR. It provides wide-range service for 180 personal assistance users in Bratislava region; however, counselling covers the whole Slovakia.
For a long time, the organization has been making effort to change regulations in the legislation which concern several aspects essential for people with NMD. Slovakia is not doing enough to provide financial support for functioning of patient organizations − the subsidy system does not take them into account and donation support is non-existent. A tool for change could and should be the National Plan for Rare Disease, which will not be really implemented without providing subsidies for patient organizations working in the area of rare diseases. In 2012, the organization became a member of EURORDIS and Alliance TREAT - NMD.
Borche Stamatoski, Miroslava Ilievska, Hristina Babunovska, Nikola Sekulovski and Sasho Panov
1. S. Sutton and L. Jimenez, A review of reported recalls involving microbiological control 2004–2011 with emphasis on FDA considerations of “objectionable organisms”, Am. Pharm. Rev . 15 (2012) 42–57.
2. L. Hall, K. A. Doerr, S. L. Wohlfiel and G. D. Roberts, Evaluation of the MicroSeq system for identification of mycobacteria by 16S ribosomal DNA sequencing and its integration into a routine clinical mycobacteriology laboratory, J. Clin. Microbiol . 41 (2003) 1447–1453. DOI: 10.1128/JCM.41.4.1447-1453.2003.
3. A. Nawaz and N
, Theoretical Biology and Biophysics Group, Los Alamos National Labatory: Los Alamos, Wiley, New York 2000.
P. O. Brown, Integration , in Retroviruses (Eds. J. M. Coffin, S. H. Hughes and H. E. Varmus), Cold Spring Harbor Laboratry Press, Cold Spring Harbor, New York 1997, pp. 161-203.
E. Asante-Appiah and A. M. Skalka, HIV-1 integrase: structural organization, conformational changes, and catalysis, Adv. Virus Res. 52 (1999) 351-369; DOI: 10.1016/S0065-3527(08)60306-1.
N. J. Anthony, HIV-1
Aliaa A. Badawi, Mahmoud M. Hegazy, Dina Louis and Mohammed A. Eldegwy
. Gheorghe and L. Damian, Carnitine deficiency - case report, Roman. J. Morphol Embryol. 53 (2012) 203-206.
6. C. Ulbricht (Ed.), Natural Standard Medical Conditions Reference - An Integrative Approach, Elsevier- Mosby, St. Louis, MO, 2009.
7. J. Yee, L-Carnitine for anemia in hemodialysis patients: A last resort, Clin. J. Am. Soc. Nephrol. 7 (2012) 1746-1748; https://doi.org/10.2215/CJN.09920912
8. European Pharmacopoeia, E. Council of Europe, Strasbourg 2014.
9. The United States Pharmacopeia, NF30, US
-High Dilutions: What Progress Is Being Made?’ Homeopathy 102: 151-54.
 Bjerså, Kristofer, Anna Forsberg, and Monika Fagevik. 2011. ‘Perceptions of Complementary Therapies among Swedish Registered Professions in Surgical Care.’ Complementary Therapies in Clinical Practice 17. Elsevier Ltd: 44-49.
 Bjerså, Kristofer, Elisabet Stener Victorin, and Monika Fagevik Olsén. 2012. ‘Knowledge about Complementary, Alternative and Integrative Medicine (CAM) among Registered Health Care Providers in Swedish Surgical Care : A National Survey among
. Alfonso and R. Tauler, Untargeted assignment and automatic integration of 1 H NMR metabolomic datasets using a multivariate curve resolution approach, Anal. Chim. Acta 964 (2017) 55–66; https://doi.org/10.1016/j.aca.2017.02.010
18. J. B. Ghasemi, M. K. Rofouei and N. Amiri, Multivariate curve resolution alternating least squares in the quantitative determination of sulfur using overlapped S (Kα)–Mo (Lα) emission peaks by wavelength dispersive X-ray fluorescence spectrometry, X-Ray Spectrom . 44 (2015) 75–80; https://doi.org/10.1021/acs.analchem.6b03116
14. S. R. Pyper, N. Viswakarma, S. Yu and J. K. Reddy, PPARalpha: energy combustion, hypolipidemia, inflammation and cancer, Nucl. Recept. Signal. 8 (2010) e002; DOI: 10.1621/nrs.08002.
15. K. S. Kilgore and A. N. Billin, PPARbeta/delta ligands as modulators of the inflammatory response, Curr. Opin. Invest. Drugs 9 (2008) 463-469.
16. S. J. Bensinger and P. Tontonoz, Integration of metabolism and inflammation by lipid-activated nuclear receptors, Nature 454 (2008) 470