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Hermann Feldmeier Infectious diseases Prof. Who is online Users browsing this forum: Orphanet au service de l’Europe et du citoyen.

The percentage of satisfied users is Gdnetica Activities The establishment of a Directory of Services can only be achieved by consolidation of data collected at the MS level as the identification of the expert resources requires a very good knowledge of the national research and health care networks.

Genetic services in Europe.

Thomas Voit Pediatrics neurology Prof. Figure 3 b Encyclopaedia As of Marchthe Orphanet Encyclopaedia contained 2, summaries in English, 2, summaries in French, 1, summaries in Italian, summaries in Spanish, 1, summaries in German, summaries in Portuguese, review articles in French and review articles in English. The role of innovative medicine in the delivery of effective healthcare. Orphanet presentation of the project.

These views have not been adopted or in any way approved by the Commission and do not necessarily represent the view of the Commission or the Directorate General for Health and Consumer Protection.

ORPHANET country coordinators | Violetta Anastasiadou –

The database of services is updated yearly. Through the establishment of a network of European partners, the consolidation of scarce and scattered rare disease information and resources has addressed a great unmet need of the rare disease community A.


This development was also intended to motivate authors who are better referenced through this well established journal. The goal was to cover 1, diseases in English by Achieved Activities a User Statistics As of the end of Marchand according to Google statistics, the number of Orphanet visitors per average weekday is 22, from over countries.

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The Encyclopaedia in Italian required days of an editor. Francesco Muntoni Neuromuscular diseases Prof. Manpower for the execution of activities 1. Achievements The volume of users of the website has dramatically increased. Workshop on Orphan drugs in the EU: Click here to sign up.

Poster on the Orphanet Project, In the two latter countries, the effective participation in Orphanet activities could not yenetica as their respective governments had not yet signed the memorandum on public health necessary for funding.

The increase in the volume of data collected and published on the website since the beginning of the contract is as follows: Website Users Patients, friends, Teachers and and families students The questionnaire was proposed to all visitors until 1, were completed. The Orphanet project,Symposium on Wilson Disease. Mariannede Visser Adult neurology Prof. All national coordinators are located in high profile institutions which can provide the adequate environment for the information scientists to work, in terms of documentation, secretarial facilities and access to the network.

The supervision of the data collection, training and quality control required days of a data manager.

The success of this project was to be measured both in terms of the increase in volume of information published on the website and in terms of number of users of the website. The Encyclopaedia has since expanded as planned. Manpower in Hungary The collection of data on services required days of the coordinator and days of an information scientist.

Conclusion The Orphanet project has developed according to plan and even surpassed initial expectations despite a difficult first year during which many new partners had to be trained, supervised, and supported without the required financial resources. Through the establishment of a network of European partners and their exchange of rare disease information, the consolidation of scarce and scattered rare disease information and resources on the Orphanet database has addressed a great unmet need of the rare disease community.


The number of articles and summaries by year is illustrated on Figure 4. The organisation of the work and formal meeting of this committee is decided at the national medicalw. The service is now guaranteed 7 days per week, 24 hours per day.

Communication Orphanet accomplishments were presented through the following lectures, publications, presentations and media: Recommendations in the field of education, mirceaa and professional requirements about genetic testing.

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Sebastiano Filetti Endocrinology Prof. This development facilitates the updating and the collection of new data. Ross Pinkerton Oncology Prof. Manpower in United- Kingdom The collection of data on services required days of an information scientist. The Encyclopaedia covered diseases with abstracts in French and in English for all and a review article for of them, either in French or in English. Help Center Find new research papers in: Columbia County Washington dr pvh home medical supply sozo buffet Far more summaries and a bit fewer review articles have been produced than originally planned.

It meets once a year and decides on the quality charter, the evolution of the database, the budget, and the dissemination of information.