Living with a rare condition"A rare disease is defined by the European Union as one that affects fewer than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in the medical literature each week. In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer than this - some will affect only a handful - or even a single person in the whole of the UK."  Source: Rare Disease UK

If you can't find information in our A-Z of neurological conditions, try the links below, or you can contact us and we will have a look for some information for you.

At The Brain Charity's library and information centre in Liverpool, we have information on many rare conditions. You can also read our copy of Contact's booklet "Living with a rare condition".

  • Rare Disease Day is held on the last day of February to raise awareness for rare diseases.
  • Wear Jeans for Genes Day is held every September to raise funds for children and families affected by genetic disorders