What is a rare disease?
A disease is defined as rare when it affects less than 1 in 2,000 citizens
No-one knows for sure how many people with Behçet’s disease there are in the UK, but it is estimated that there may be about 0.64 in 100,000 – that is, about 600 people.
Patients with rare diseases are the orphans of health systems, often without diagnosis, without treatment, without research, and therefore without reason to hope.
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity.
Patients with very rare diseases and their families are particularly isolated and vulnerable. The life expectancy of patients with rare diseases is significantly reduced, and many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities. Research on rare diseases is scarce.
Behçet’s Syndrome Society Vision
The Society cares for all those associated with Behçets disease, whether members, enquirers or those yet undiagnosed.
Our ultimate aim is to find a cure for Behçets disease, but in the meanwhile we will strive to obtain the best care for all Behçet’s disease patients. This includes helping them to obtain the quickest diagnosis possible, quick referral to a specialist consultant as near as possible to their home, and enabling them to gain the best drug regimen possible to alleviate their symptoms.