It’s Undiagnosed Children’s Day 2021

Friday 30 April 2021

Tags: genetic condition, rare conditions, support group, undiagnosed

Friday 30 April 2021

Today, Friday 30 April is Undiagnosed Children’s Day, an important campaign to 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. 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.

That’s why it’s so important that everyone working with undiagnosed children understands the key issues and that families get the right help. Undiagnosed Children’s Day is organised by our friends at SWAN UK (Syndromes Without A Name), who run fantastic events for families, and they have many ways you can get involved in the day!

Our support for families living without a diagnosis

On our website you can read about:

Many entitlements are based on the amount of care your child needs, rather than having a named diagnosis. This includes support from social services, benefits such as Disability Living Allowance and Personal Independence Payment, and support in education.

You can also download our guides written for parents of disabled children:

Meeting other parents

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.