We recognise that getting a diagnosis can be a very stressful and emotional time for families and they often need our continued support to make sense of the diagnosis. We will work with families to identify their needs and see how these can best be met – sometimes this will involve signposting them, if relevant, but often the diagnosis is very rare and no other support exists so for now they remain part of our community. We never ask anyone to leave and will continue providing support as long as the family feels they need it.
As a result of genetic sequencing, more children are being diagnosed with very rare conditions, such as single-gene disorders where they may be one of only a few cases known worldwide. We have a specific forum for members whose children have been diagnosed called our ‘graduates group’ where they can discuss issues resulting from their new diagnosis and we are working with them as a group to identify the support they require.