The rare disease challenge and how to promote a productive rare disease community: Case study of Birt-Hogg-Dubé Symposia
Myrovlytis Trust, 26 Cadogan Square, London, SW1X 0JP, UK
Orphanet Journal of Rare Diseases 2012, 7:63 doi:10.1186/1750-1172-7-63Published: 5 September 2012
Resources for rare diseases are lacking. Patients do not have the information and support that they need, and researchers struggle to make progress due to a shortage of skills and collaborations within the field. One way to overcome these hurdles is to host annual Symposia, focused on a specific rare disease. Here, we use the example of Birt-Hogg-Dubé Symposia to discuss the practical issues of such meetings, including the importance of timing and the choice of invited speakers. We highlight the ways in which rare disease symposia can create a single community, removing barriers between patients, clinicians and researchers.