lunes, 15 de diciembre de 2014

Orphanet Journal of Rare Diseases

Orphanet Journal of Rare Diseases

Orphanet Journal of Rare Diseases - IMPACT FACTOR 3.96

Read Rare Disease day 2014 series


Baetens D, Mladenov W, Delle Chiaie B, Menten B, Desloovere A, Iotova V, Callewaert B, Van Laecke E, Hoebeke P, De Baere E, Cools M

Orphanet Journal of Rare Diseases 2014, 9 :209 (14 December 2014)

About the European Union Committee of Experts on Rare Diseases

The European Union Committee of Experts on Rare Diseases (EUCERD), established via the European Commission Decision of 30 November 2009 (2009/872/EC), brings together stakeholders in the field of rare diseases and representatives of the EU Member States (MS) to:
  •  Assist the European Commission with the preparation and implementation of Community activities in the field of rare diseases, including drawing up guidelines and recommendations;
  •  Foster exchanges of experience, policies and practices between specialised bodies at MS level, European authorities in the field of research and public health, and stakeholder groups.
Since its first meeting in December 2010, the EUCERD has published a number of reports and recommendations, all of which are available on the EUCERD
In particular, the EUCERD issues an annual report on the State of the Art of Rare Disease Activities in Europe. This five-volume report provides detailed information on the activities in the field at both European and Member State level, covering a wide range of aspects such as centres of expertise; registries; genetic testing resources and activities; patient organisation activities; information resources; guidelines and recommendations; educational initiatives; research and funding mechanisms and participation in EU-level projects; rare disease conferences and events; orphan medicinal product incentives, availability, reimbursement and pricing policies; and specialised social services.
All five volumes of this report are available freely for download on the EUCERD website.

About Orphanet

Orphanet is the reference portal for information on rare diseases and orphan drugs. It offers a range of freely accessible services:

No hay comentarios:

Publicar un comentario