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European Pharmaceutical Journal

Acta Facultatis Pharmaceuticae Universitatis Comenianae (formerly)

2 Issues per year


CiteScore 2016: 0.28

SCImago Journal Rank (SJR) 2015: 0.195
Source Normalized Impact per Paper (SNIP) 2015: 0.202

Open Access
Online
ISSN
2453-6725
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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

B. Ramljaková
Published Online: 2013-04-20 | DOI: https://doi.org/10.2478/afpuc-2013-0009

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.

Po schválení Národnej stratégie rozvoja zdravotnej starostlivosti o pacientov so zriedkavými chorobami na roky 2012 - 2013 dňa 24.10.2012 vládou SR je dôležité pre všetkých účastníkov procesu, aby sa zapojili. (Kto sú všetci účastníci? - lekári, farmaceuti, vedci, národné autority, regulátori, zdravotné poisťovne, sociálna poisťovňa, zdravotní a sociálni pracovníci, farmaceutický priemysel, ale aj politici, pacienti a pacientske organizácie)

Na základe svojich skúseností a problémov, ktoré pacienti riešia je potrebné, aby sa PO zamerali na okruhy dôležité pri vypracovaní NP ZCH v SR, a to predovšetkým na komplexný prístup k pacientovi na základe multidisciplinárneho tímu, na začlenenie pacientov do rozhodovacích procesov - predpokladom je tu vzdelaný pacient, na špecializované služby pre pacientov so ZCH a ich rodiny, na integrovanie pacientov so ZCH už do existujúceho zdravotného a sociálneho systému a linky pomoci pre pacientov (Help lines).

Slovenská aliancia zriedkavých chorôb (Aliancia ZCH) vznikla 12.12.2011 registráciou na MV SR a dôvodom prečo vznikla, je snaha riešiť problémy v oblasti ZCH komplexne a systémovo, čoho dôkazom je zapojenie sa do tvorby NP ZCH v SR. Združuje zatiaľ 12 PO v oblasti ZCH na Slovensku. Poslaním Aliancie ZCH je trvale zlepšovať zdravotné a sociálne podmienky života ľudí so ZCH a ich rodinných príslušníkov. Zvyšovať kvalitu života ľudí so ZCH a podporovať ich integráciu do spoločnosti.

V úzkom partnerstve s EURORDIS - Európskou alianciou zriedkavých chorôb sa zapojila do projektu EUROPLAN II (2012 - 2015) organizovaním Národnej konferencie na podporu vypracovania Národného plánu rozvoja starostlivosti o pacientov so ZCH na Slovensku.

Keywords : Alliance RD; National strategy; National plan; EURORDIS

  • EURORDIS. The voice of 12,000 patients: Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe : a report based on the EurordisCare3 surveys [online]. Eurordis, 2009 ISBN 29-530-3181-2. (www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf). Accessed April 20 2013.Google Scholar

  • EURORDIS. EUROPLAN - Guidance for National Plans and Conferences: EUROPLAN National Conference Final Reports [online]. EURORDIS, 2010, 21/09/2012. (http://www.eurordis.org/content/europlan-guidance-national-plans-andconferences). Accessed April 20 2013.Google Scholar

  • 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.Google Scholar

About the article

Published Online: 2013-04-20

Published in Print: 2013-03-01


Citation Information: Acta Facultatis Pharmaceuticae Universitatis Comenianae, ISSN (Print) 0301-2298, DOI: https://doi.org/10.2478/afpuc-2013-0009.

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