Why should I join?
Rare diseases affect more than just the individual; around 1 in 17 people in the UK have a rare disease and their condition has an impact on the lives of those around them, family, friends and colleagues. Owing to the uncommon nature of these diseases it is very difficult to search for patterns in our genetic code that may help unlock the disease mechanism.
This is where we need your help. If you or your child are affected by a rare disease you may be eligible to take part. If you would like to take part you will be making an amazing contribution to rare disease research.
By studying the genomes of thousands of volunteers affected by specific groups of diseases, researchers will have a powerful resource of information to enable them to pinpoint genes that cause these diseases. Discovering genes causing rare diseases is the start of a journey to unravel accurate testing methods which will enable rapid diagnosis. Faster diagnosis is an important tool in selecting the best care and possible treatment for the individual with a rare disease, and also provides information to the wider family.
Whether you decide to join or not, your decision will not affect your healthcare in any way and you are free to withdraw at anytime without having to give a reason.