European Conference on Rare Diseases - Lisbon November 27 - 28th 2007
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This page contains summaries of the presentation for the category "Policy and implementation: European, Regional, State and Local Policy" as well as links to the documents.
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Dr Ségolène Aymé (Europe)
Overview of Member States public health policies for rare diseases: a 2007 update
Dr Birgit Wetterauer (Germany)
Overview of national research policies and collaboration between Member States
Dr Monica Mazzucato (Italy)
Estimating the impact of Rare Disorders on population health: an Italian experience ,European, Regional, State and Local Policy
Keywords: Register, Hospital Discharge Records, ICD codes, prevalence
Summary: The study estimates the impact of RD on population’s health comparing two independent sources of data monitoring the same population. ICD-based current statistics can be used to roughly estimate the number of affected patients in a defined area.
Prof. Josep Torrent-Farnell (Spain)
Study for detecting needs and actions of patients to improve the attention and assistance offered to them (A regional experience in Catalonia). European, Regional, State and Local Policy
Keywords: rare diseases, sociosanitary system, model of assistance, expressed needsTo be continued
Summary: This poster presents a study whose objective was to identify the needs and problems that people with rare diseases suffer in order to propose solutions and establish a priority of practicable projects for the Catalan health system (Catalonia is a region of Spain).
Dr Oliviana Gelasio (Italy)
Orphan drugs: the challenges of availability and sustainability
New orphan drug development
Keywords: orphan drug, designation, cost monitoring, sustainability
Summary: Prevalence data from the monitoring system established in Veneto Region, Italy, since 2002 allow a rough estimation of the costs related to orphan medical products for rare disorders patients. The impact on the regional and national system is not negligible due to the high costs of this treatments and to the increasing number of patients eligible to therapy. A challenge concerning sustainability of this system in the near future is arising
New Initiatives in Member States
Dr Domenica Taruscio (Italy)
New italian Actions
Dr Christophe Leroy (France)
The French Emergency Project
Erica Daina, Luca Barcella, Roberta Cacialli (Italy)
Five-years experience as a Regional network on rare diseases
Summary: In the last years, the need to promote a network of reference centres for rare diseases has been considered a priority in European Community. Italy has officially adopted the concept of centres of reference for rare diseases with a National Plan in 2001. The Plan includes: accreditation of centres of reference in each region for one or more diseases, establishment of regional coordinating centres, and implementation of a registry of patients to be based at the Istituto Superiore di Sanità in Rome.
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