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The EURO-WABB Project

An EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

Breadcrumbs

Work Package 2 : Dissemination of the Project

Workpackage description

Task 1: Stakeholder analysis

With support from EURORDIS, we will focus on patients with Wolfram, Alstrom and Bardet-Biedl Syndromes, carers, support groups, health professionals involved in their care and health service providers. We will include WABB researchers and medical educators responsible for undergraduate and postgraduate medical curricula from academic institutions in several EU member states. We will use a mix of focus groups and questionnaires designed to assess the level of knowledge about WABB and the learning needs.

Task 2: Development of a dissemination plan

Our plan will disseminate awareness and knowledge of WABB syndromes to health professionals, health policy makers, and patient support groups. The purpose is to support efficient diagnosis, treatment and research for Wolfram, Alstrom and Bardet-Biedl syndromes. We will do this through this website, project information and educational material to our target audience (link to WP4), promotion through Orphanet, and a EURO-WABB workshop.

Task 3: To ensure transferability of results

We will publish management guidelines, registry and educational material details, and contact details for centres of expertise for WABB diseases on the Orphanet website. This information will link to Orphanet organizations in individual member states. Project Progress reports will be published in OrphaNews Europe. We will increase health professionals’ awareness through presentations at professional scientific meetings (European Association for the Study of Diabetes, International Society for Paediatric and Adolescent Diabetes, European Society for Paediatric Endocrinology, European Society for Human Genetics), and influence health policy makers through EURORDIS and Orphanet.

Task 4: To ensure sustainability of the dissemination

We will work with EURORDIS to disseminate at professional and scientific meetings, to review the project and promote continuation of delivery of the objectives and results through EURORDIS contacts. We will also develop web based information pages on social networking sites such as ‘Facebook’ to disseminate information on the registry and diseases to the wider community. The Scientific Committee will meet annually to review the research and public health strategy and consider research applications for use of The Registry. These activities will also be supported and disseminated by Orphanet France.