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This page contains summaries of the presentation for the category "Information services" as well as links to the documents.

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Ségolène Aymé, Ana Rath, Matthieu Levi-Strauss (France)

Orphanet: achievements and new challenges-Research networks

Keywords : Orphanet, orphan drugs, rare diseases, database, clinical trials, specialised clinics, directory of services, encylopaedia, OrphaNews, prevalence, research projects, diagnostic laboratories

Summary: Orphanet is a freely accessible database dedicated to information on rare diseases and orphan drugs with the aim of improving the diagnosis, care, and treatment of patients with rare diseases

Birgitte Bjerkely, Mads Bjerke (Norway)

Patient participation in the process of producing information material

Summary: Patient participation on different levels in the Norwegian health care system has been a major issue for the government over the last 15 years. The legislation states that the patient’s voice is a key element in developing health care services for the public. Both individuals and patients’ organizations have the opportunity to influence the services they can rightfully claim, using their experiences and opinions.

Emma Gillaspy (France)

The ORPHANET Directory of Services: Activities Related to Rare Diseases Across the United Kingdom

Keywords: Orphanet

Summary: This publication presents the data on rare disease-related activities that has been collected to date from across the United Kingdom. This data has been added to the Orphanet website which is the European portal of rare diseases

Robert Hejdenberg (Sweden)

The Adult programme at Agrenska - a Centre of Competence for Rare Diseases

Summary: Agrenska is a national centre of competence for rare diseases. Our aim is to build not only knowledge but to build competence among our target groups. By being a progressive and creative meeting place between needs and knowledge we contribute to spreading information to our target groups: children, adults and families as well as to professionals. By our method of working in several dimensions: knowledge transfer from experts in a number of fields concerned, exchange of experiences, reflections. The ambition with our programmes is to build competence/capability for life

Prof. Leonor Teixeira (Portugal)

Web-enabled System Design for Managing Clinical Information in Hemophilia Care

Keywords: Haemophilia; Patient Treatment; Patient Registry; Home Therapy; Shared Care; Web Application; Design of Information System.

Summary: Nowadays, Information Systems combined with the Internet, have a significant role in data storage, as in the efficiency and promptness of data transfer and can offer a large contribute in managing and manipulating the information resulting from treatment and attendance of chronic patients, as hemophiliacs. On the other hand, the Internet also created the opportunity of patients to insert data concerning home treatments.
This paper briefly describes the design process of a Web-based information system to help the management of inherited bleeding disorders integrating, diffusing and archiving large sets of information from heterogeneous sources in scope of the hemophilia care at the Hematology Service of Coimbra Hospital Center, in Portugal.

Dr Marion MATHIEU (France)

Innovating action proposed by Tous Chercheurs and the French-speaking Federation of DNA Schools : Practical training in biology and genetics for rare disease associations

Keywords: Tous Chercheurs, Federation of DNA schools, practical training in molecular biology and genetics, rare disease associations, researcher work, research specificities

Summary: In May 2004, the association Tous Chercheurs (initially named DNA school in Marseilles) developed innovative practical training for rare disease associations. These trainings help patients to acquire a good knowledge in biology and genetics, understand time scale and specificities of research, see research progress on their pathology. Between 2004 and 2006, Tous Chercheurs formed 130 patients from 13 different associations, highlighting that such an approach is meeting a crucial need and desire from patient associations. Since 2007, these sessions have been expanded to a national scale (France). Acting as initiator and catalyser of this type of training of patient associations, we look forward to extend this successful story to a Europe-wide level

Prof. Rumen Stefanov (Bulgaria)

A MODEL FOR INTEGRAL RARE DISEASE APPROACH IN EU COUNTRIES - European, Regional, State and Local Policy

Keywords: rare diseases policy, information centre, rare diseases awareness

Summary:The Centre for rare diseases in Bulgaria is presented as a successful model for integral rare disease approach that can be adapted and applied also in other countries

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