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July 2013

RARE-Bestpractices project seeks to improve and harmonise the clinical management of rare diseases


RARE-Bestpractices meeting

The research has received funding from the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement n° 305690

RARE-Bestpractices, a four year project funded by the European Union Seventh Framework Programme, brings together a team of high level experts in the areas of clinical practice guidelines, systematic review, health technology assessment, health policy, rare disease epidemiology and public health, to develop a sustainable networking platform for sharing best practices for the management of rare diseases.

The principle tasks of the project include collecting, evaluating and disseminating existing rare disease best practice guidelines; identifying an agreed methodology for developing and updating guidelines; targeted training activities to disseminate expertise and knowledge; and a forum for the exchange of information and the facilitation of collaborations.

EURORDIS will act as a transversal partner in the RARE-Bestpractices project, ensuring the involvement and capacity-building of patient organisations across Europe. EURORDIS will be specifically involved in the creation of methodological quality standards for developing best practice guidelines on rare diseases and in the development of a pilot  best practice guideline based on such standards,  ensuring the involvement of patients and their families in the elaboration process. EURORDIS will also work on the creation of the patient version of the pilot guideline and on the management of training activities organized to support stakeholders in developing and evaluating guidelines for rare diseases.  EURORDIS will also work with patient organisations on capacity building emphasizing the benefits of best practice guidelines via the dissemination of information and education of patient advocates.

Coordinated by the National Centre for Rare Diseases of the Istituto Superiore di Sanità (ISS, Rome), RARE-Bestpractices started in January 2013 with a first workshop focusing on common methodological quality standards for developing best practice guidelines on rare diseases.  A second meeting took place in late May 2013, during which participants discussed the first deliverables, upcoming activities, and the work plan. By improving the clinical management of rare diseases, RARE-Bestpractices will better health outcomes and quality of life for patients and reduce inequality in rare disease care.


Louise Taylor, Communications and Development Writer, EURORDIS