Getting a diagnosis can be a long and difficult process, and sometimes children won’t receive a diagnosis. Genetic Alliance UK estimates that about 50 per cent of children with a learning disability have no definitive diagnosis and there are also some children with a disability that no one can explain the cause of. Without a diagnosis your child will still be entitled to support to meet their individual needs regardless of whether they have a diagnosis.

The National Charity Contact provide information on many medical conditions. To find out further information about a medical condition or disability please visit here


There are a number of reasons why getting a diagnosis can be difficult:

  • There are more than 6,000 known rare conditions – doctors rarely see children with these conditions, making it harder to recognise them when they do.
  • Different conditions can have similar features or symptoms.
  • Some children have a number of features or symptoms that do not fit into one specific condition.
  • There are significant variations in the way that a condition can affect different children.
  • Certain things that indicate a condition may not appear until your child is older – this may result in a late diagnosis or even a change in diagnosis.

Because of improvements in science and medicine, there may be a belief that doctors can always find out why something has happened to your child. Sometimes this isn’t the case and this can be disappointing.

Further Information

Living without a diagnosis

Living with a rare condition

All About Diagnosis