For more information on Rare Disease Day visit

Why not use this event as an opportunity to learn or teach about a rare disease through the words of our storytellers. Visit Telling Stories, Understanding Real Life Genetics and select ‘Genetic Condition’ from the Quick Themes drop down list on the right hand side and click on a condition that you’ve not encountered before.

For more information on rare diseases visit Orphanet. This is a free database for patients, professionals, support groups, industry and the public. It is dedicated to providing information on rare diseases and orphan drugs with the aim to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases. As part of the contribution to the awareness campaign, Orphanet is re-launching its website next month.