Παρακολούθηση και υποστήριξη ασθενών σπάνιων παθήσεων στην Ευρώπη : ανάλυση της περίπτωσης του συνδρόμου Μarfan
Monitoring and support of patients of rare diseases in Europe : analysis of the syndrome’s Marfan case
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Abstract
The main objective of this dissertation is the description of treatment and support for the patients and data analysis for the rare disease, Marfan (MF) in some European countries. The data emerged from European research non-governmental organization EURORDIS (Rare Diseases Europe) located in Paris, representing at European Union level, associations-representatives of patients and people with rare diseases. Rare diseases are characterized those having prevalence less than 5/10.000 inhabitants, according to the European Union Directive no. 141/2000 on Orphan Drugs. The EURORDIS association represents people with rare diseases from 44 different countries. Also more than 1.000 rare diseases represented in order to be promoted as a public health priority at European level. In 2009 they published the results of research EurordiCare3. This study aimed to document the experiences of patients from different European countries. Within this thesis we will present descriptive statistics for the available variables and checks made on the dependence of categorical variables. Also, loglinear models will be used to investigate possible factors that significantly affect the early diagnosis of the disease and the access to supporting social servives.