Rare Disease UK (RDUK) will be launching a report today on Rare Disease Day 2012, outlining their evidence and recommendations for a strategy for rare diseases. As part of the campaign they are encouraging patients and their family members or friends to send in their testimonies of health inequality.
RDUK believes that the 3.5 million people in the UK 
with a rare disease should receive high quality services, treatment and support. The strategy includes steps for research, prevention, screening, treatment, support and rare disease services amongst others.
Rare diseases are defined by the small number of people being affected by the disease, in some cases this may equate to a single person in the whole country. There are between 6000 – 8000 recognised rare diseases and approximately 7% of people will be affected by a rare disease at some point in their lives. Rare diseases include the more well-known conditions of cystic fibrosis and Huntington’s disease and are often life-threatening; 30% of all people affected by rare diseases die before their fifth birthday and 75% of rare diseases affect children.