Today is Undiagnosed Children’s Day

2 mins read

Friday 26 April 2024

Tags: rare conditions, Undiagnosed Children's Day

Today, Friday 26 April is Undiagnosed Children’s Day – an important campaign organised by SWAN UK (Syndromes Without a Name), to help raise awareness of undiagnosed genetic conditions.

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed and around a third of families who get in touch with our rare conditions officer at Contact have a child with an undiagnosed condition.

Children living without a diagnosis often have lots of medical appointments, and their parents can worry that they won’t get the support they’re entitled to.

If you don’t have a diagnosis for your child, we have lots of information on our website, including:

Did you know that your child doesn’t need a diagnosis to access care and support?

This includes support from social services, benefits such as Disability Living Allowance (DLA) and support in education.

Meeting other parent carers

If your child is living without a diagnosis, you’re not alone! Other parents with disabled children can be a great source of companionship and support. And even if your children don’t share a condition, many parents find that the issues they face are the same.

One way of meeting other families is by joining a local support group, many of which are not based around a single condition.

You can also find parents across the UK in our private Facebook group, a safe space to talk to other families about a whole host of topics, from behaviour, eating and sleeping to education, health and social care.