"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".
- OrphaNet
Europe-wide website providing information about rare conditions
www.orpha.net
• Look for a patient organisation: http://tinyurl.com/yym9pqty - U.S. National Organization for Rare Disorders (NORD)
Information for patients and medical professionals
https://rarediseases.org
• Look for a condition: http://tinyurl.com/y5fut9af - Contact
Charity for families with disabled children
https://contact.org.uk
• Look for a condition: https://contact.org.uk/medical-information/conditions - Genetic Disorders UK
Charity working to improve the lives of people affected by genetic conditions
www.geneticdisordersuk.org
• Look for a condition: http://tinyurl.com/od997pf
• Look for a charity or patient group: http://tinyurl.com/yxz9kzmq - Rareshare
Worldwide online social hub
www.rareshare.org
• Look for an online community: https://rareshare.org/communities - RareConnect
Condition-specific online communities
www.rareconnect.org - SWAN UK
Syndromes Without A Name is a support network for families of children and young adults with undiagnosed genetic conditions.
www.undiagnosed.org.uk - Rare Disease UK
National campaign for people with rare diseases and those who support them
www.raredisease.org.uk - Support when your child does not have a diagnosis (Contact)
https://contact.org.uk/no-diagnosis
- 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
