Support network SWAN UK (syndromes without a name) is launching an Urdu video to reach out to Urdu speaking families who have children with undiagnosed genetic conditions.
The video, which highlights the impact of having a child with an undiagnosed genetic condition, will launch on Monday 4 June 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. A family survey revealed that 75% experience feelings of isolation.
SWAN UK member Mohammad Zafar who lives in Manchester says:
‘I took part in the video as I wanted to do something for the community and I believe raising awareness of undiagnosed genetic conditions is very important within Asian families. Being a member of the SWAN UK community has been a really positive experience, especially being able to talk to other families of children with undiagnosed genetic conditions who I can relate to and who are there to support each other.’
The Urdu resources have been produced as part of the Breaking Down Barriers project.
Kerry Leeson-Beevers, National Development Manager, Breaking Down Barriers, Alström Syndrome UK says:
‘A huge thank you to Moiz, Mohammad and Sadia for sharing their story and to SWAN UK for their excellent contribution to the Breaking Down Barriers project. The project is aimed at developing supportive and inclusive services for individuals and families affected by genetic disorders and I believe that this video and the leaflets produced in Urdu will be incredibly valuable resources for other families who are experiencing similar difficulties in receiving a confirmed genetic diagnosis.
‘Being part of Breaking Down Barriers is providing organisations with information, guidance, support and funding to enable them to develop their skills and resources to help improve engagement with people from ethnic minority communities. Our hope is that families will feel more supported and have access to accessible information to enable them to make informed choices. Well done to everyone involved!’
Lauren Roberts, the National Coordinator of SWAN UK, added:
‘We know that a significant number of Urdu speaking families are affected by undiagnosed genetic conditions so we're delighted that the Breaking Down Barriers project has given us the opportunity to develop targeted resources for them. We hope these will be the catalyst to help us reach out to more of these families and work with them to develop the support we offer.’
The Urdu leaflets and audio files will be published on the SWAN UK website: undiagnosed.org.uk/support-information
The Urdu video will be published on the SWAN UK YouTube channel: youtube.com/user/SWANchildrenUK
You can find out more about The Breaking Down Barriers project here: breaking-down-barriers.org.uk
If you'd like a copy of the video before the launch email: email@example.com.
SWAN UK is the only dedicated support network for families of children and young adults with undiagnosed genetic conditions. SWAN UK is run by the charity Genetic Alliance UK, registered charity numbers: 1114195 and SC039299. Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH. 020 7831 0883.
SWAN UK is part of the Breaking Down Barriers project run by Kerry Leeson-Beevers, National Development Manager at Alström Syndrome UK and is funded by The Sylvia Adams’ Charitable Trust.
For further information, case studies or to arrange an exclusive interview with Mohammad or another family affected by an undiagnosed genetic condition, please contact Emma Damian-Grint: firstname.lastname@example.org or 020 7831 0883. Please direct enquiries after 28 May to Miriam Ingram: email@example.com
To view our family stories please visit our YouTube channel: https://www.youtube.com/user/SWANchildrenUK
 ‘SWAN UK member survey 2016’, SWAN UK, February 2016