Rare Disease Day: raising awareness of rare disease

28 February 2011

Did you know that today is Rare Disease Day? All over the world, rare disease patient organisations and their partners are joining forces to create awareness of rare diseases and the millions of people affected by them.

The organisers of Rare Disease Day said: "Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in Europe and the US alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research."

Today is the fourth annual Rare Disease Day, which was initiated by the European Organisation for Rare Diseases (EURORDIS) in 2008, and this year’s focus is on health inequalities. “Most rare disease patients spend years wandering through the maze of health systems to find an accurate diagnosis. Many are fighting to obtain life-saving treatments or to be reimbursed by their health authorities. Others are denied access to specialised services and to disability compensation. They have further difficulties finding a job, getting into school, obtaining a loan or accessing life insurance,” says EURORDIS’ Chief Executive Officer Yann Le Cam.

Find out more

More information about Rare Disease Day and the events planned in participating countries can be found at www.rarediseaseday.org

If you have a rare or undiagnosed neurological condition you might be interested in our information on diagnosis and undiagnosed conditions.