This Sunday (28th February 2010) is ‘Rare Disease Day’, an annual event aimed at raising awareness of a multitude of rare diseases across the globe. The day is co-ordinated by Eurodis and is aimed at individuals from all walks of life – from members of the general public to public health authorities and drug developers.
This event is much needed and does a lot for the rare disease ’cause’ and I’d just like to take this opportunity to remind everyone that for some people, everyday is a rare disease day.
Undoubtedly, no comfort is gained in being diagnosed with the commonest of cancers, but prompt clinical management and treatment can not only be re-assuring but a real lifeline too. Often however, the positive diagnosis of a rare syndrome is often itself a struggle, let alone prompt and comprehensive treatment.
The organisers of Rare Disease Day correctly point out that there is ‘a lack of specific health policies, a scarcity of expertise and little research’ in the area of so-called ‘Orphan Diseases’ and that by increasing the awareness of ‘rare disease’ in the public consciousness, this matter can be addressed.
www.BHDsyndrome.org aims to be the primary online resources for individuals interested in, or affected by BHD Syndrome, a rare genetic disease.