Signposting - Support for families - Support for parents & carers - SWAN UK (syndromes without a name) - resources for Urdu-speaking families

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Section: Signposting

Subsection: Signposting - Support for families - Support for parents & carers

SWAN UK (syndromes without a name) - resources for Urdu speaking families

Support network SWAN UK (syndromes without a name) has launched an Urdu video to reach out to Urdu speaking families who have children with undiagnosed genetic conditions.


The video highlights the impact of having a child with an undiagnosed genetic condition and this has been launched alongside Urdu genetics information leaflets and audio versions spoken in Urdu.

The video features SWAN UK members Mohammad and Sadia Zafar and their six-year-old son Moiz, who is undiagnosed. Moiz is one of the 6,000 children born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Parents of children with undiagnosed genetic conditions often feel isolated and alone.

The Urdu resources have been produced as part of the Breaking Down Barriers project. The project is aimed at developing supportive and inclusive services for individuals and families affected by genetic disorders.

The Urdu leaflets and audio files are available on the [SWAN UK website]

The Urdu video can be found on the [SWAN UK YouTubechannel]

You can find out more about The Breaking Down Barriers project [here]