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RARE-Bestpractices involves patients in developing and collecting rare disease guidelines

July 2014

RARE-Bestpractices meeting

RARE-Bestpractices project members

An online platform for guidelines

RARE-Bestpractices is developing an online platform that will include a database of guidelines for rare diseases, as well as research recommendations. EURORDIS is a transversal partner in the project and patient organisations are encouraged to contribute to the collection of rare disease guidelines that will be stored on the online platform, which will also feature a web community.

RARE-Bestpractices draws a crowd at the EURORDIS Membership Meeting 2014 Berlin

RARE-Bestpractices is a four year initiative that launched in January 2013, funded under the European Union Seventh Framework Programme and coordinated by the National Centre for Rare Diseases of the Istituto Superiore di Sanità (ISS, Rome).

The EURORDIS Membership Meeting 2014, held in Berlin before the European Conference on Rare Diseases & Orphan Products (ECRD), was the occasion to hold a workshop on Patient Involvement in Best Practice Guidelines Development: Improving Rare Disease Care in order to build the capacities of patient representatives on the outcomes and methodology of the RARE-Bestpractices project and to get their views on the issues raised by the project. A questionnaire was circulated to get participants’ views on guidelines development and use. Case studies of patient involvement in guidelines development were presented and a discussion followed on ways to involve patients more. Participants highlighted challenges, including transparency, compliance to best practice guidelines, the importance of a quality assurance system and of an impartial evaluation of guidelines.

The RARE Journal & project newsletter

RARE-Bestpractices has launched the Rare Diseases and Orphan Drugs Journal (RARE Journal), an open access, online, peer-reviewed journal published three times per year to provide a forum on public health, health policy and clinical research that will improve health care and outcomes for persons with rare diseases. A project newsletter has also been created and is freely available. Other activities include a survey on rare disease best practice guidelines and programmes in different EU Member States.

Call for best practices and working group

EURORDIS is establishing a patient working group to advise on best clinical practices and the RARE-Bestpractices project activities. This will keep project partners informed of issues important to patients and guarantee a patient-centric approach throughout project activities. To submit best practice guidelines for a rare disease or to get involved in the patient working group please contact Juliette Senecat

Louise Taylor, Communications and Development Writer, EURORDIS