A University of Plymouth academic has launched a new initiative to provide a lifeline to people with rare diseases.
Dr Konstantin Glebov and the new South West Rare Disease Policy group will bring together people from across the South West with scientists, policy makers and medical professionals to inform recommendations on how to improve current policies.
See the new website https://www.rarediseasessouthwest.org.uk
In Europe, a disease is classified as being rare when it affects fewer than 5 in 10,000 people within the general population. These diseases are often genetic and of low prevalence, so special combined efforts are needed to address them, but there are as many as 7,000 different conditions.