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SWAN UK (syndromes without a name) | Breaking Down Barriers
01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

Address: Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, London, WC1N 3BH
Telephone Number: 02078310883
Email: info@undiagnosed.org.uk
Website: www.undiagnosed.org.uk
Registered Charity Number: 1114195 and SC039299.
Prevalence of SWAN: There are an estimated 6,000 children born in the UK each year with a syndrome without a name – a genetic condition so rare it is likely to remain undiagnosed.

What is  SWAN UK (syndromes without a name)?

SWAN UK (syndromes without a name) is the only dedicated support network for families of children and young adults (0-25) with undiagnosed genetic conditions in the UK. We are run by the charity Genetic Alliance UK.

SWAN stands for ‘syndromes without a name’. It is not a diagnosis, but a term used when a child or young adult is believed to have a genetic condition and testing has failed to identify its genetic cause.

Some children affected by a syndrome without a name might be described as having global developmental delay or failure to thrive. They might have learning disabilities and/or physical disabilities. They can sometimes have complex medical needs and may have epilepsy. Some children may not have any learning disabilities but be physically disabled whilst others are physically unaffected but have learning disabilities. Children affected by a syndrome without a name can have a range of different symptoms and each child is likely to be affected differently.

What support is available?

It is free to join and members of SWAN UK can:

  • Make contact with other families who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.
  • Attend free, fun events for all the family, like our growing local stay and play sessions or regional day trips to to theme parks such as Peppa Pig World and Flamingo Land.
  • Access 24/7 information and support through our online forums
  • Get opportunities to help raise awareness by speaking at events, sharing your story or even coming to Westminster with u s to talk to MPs about the issues affecting your family!
  • Develop your own personal and professional skills by volunteering as a SWAN UK Parent Rep.
  • We also send balloons to children when they are in hospital to cheer them up.

We develop local support services and provide training to parent representatives throughout the UK and we organise events to bring families together.

Over the next few years we will be working closely with the new Rare Disease Centre opening at Birmingham Children’s Hospital where the first ‘SWAN’ clinics in the UK are being initiated.

A number of information leaflets are available to download here from the Genetic Alliance UK resource centre. Leaflets are available in English and are currently being developed in other languages.

Information provided by SWAN UK, 17th July 2017

Breaking Down Barriers Project Overview

SWAN UK aims to ‘focus on engaging with Asian families of children with undiagnosed genetic conditions.’ The project will cover three main areas:

  • Information – Update and translate their factsheets into different languages. These will be available on their website and via all of the Regional Genetics Centres in the UK.
  • Focus Group – in Birmingham to carry out a consultation event with families from local South Asian communities, to develop their understanding and tailor the support they provide
  • Link – with the development of the new Rare Disease Centre at Birmingham Children’s Hospital and the SWAN clinics

Year 2 Project

SWAN UK will submit an action plan in January with a view to starting their year 2 project in February 2018.