Support network, SWAN UK (syndromes without a name) is hosting a free information event in partnership with Oxford NHS Genomic Medicine Centre for families of children and young adults with 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 it is often impossible to diagnose.
SWAN UK, the only dedicated support network for families of children with undiagnosed genetic conditions, is hosting the event on Thursday 26 April at St Anne’s College, Oxford.
The event takes place the day before Undiagnosed Children’s Day, which raises awareness of what it’s like to live with an undiagnosed genetic condition. Families will have a chance to meet others local to them who face similar challenges.
Speakers will include a parent of a child with an undiagnosed genetic condition and representatives from Oxford Medical Genetics Laboratories, Oxford NHS Genomic Medicine Centre and Oxford Academic Health Science Network (Oxford AHSN). The event is supported by the Centre for Personalised Medicine.
SWAN UK Parent Rep for Oxfordshire, Helen Dennehy said:
‘I hope the information event will show people that they are not alone and that there are other families out there who can relate. Having a child with an undiagnosed genetic condition brings up many barriers in a lot of areas. We don’t know what the future holds for our children so the event is a great opportunity for families to meet and get an understanding of what is involved with the genetic testing, as this is something that many families go through.’
Families can book free their place by emailing SWAN UK: [email protected] or calling 020 7831 0883.
For further information, case studies or to arrange an exclusive interview with a family affected by an undiagnosed genetic condition, please contact Miriam Ingram: [email protected] or 020 7831 0883.
SWAN UK has a dedicated website for the awareness day: undiagnosedchildrensday.co.uk
On Undiagnosed Children’s Day SWAN UK will be using the hashtag #UCDsuperhero on Twitter @SWAN_UK
For more information please visit:
Notes for editors:
SWAN UK (syndromes without a name) is run by the charity Genetic Alliance UK, registered charity nos. 1114195 and SC039299. Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, London, WC1N 3BH. 020 7831 0883.