Start Date: 26/11/2013

End Date: 26/11/2013

Cost: Free

Venue: Great Ormond Street Hospital/ Weston House Lecture Theatre


Genetic Aliance UK/ Clinical Genetics Department at Great Ormond Street Hospital

Contact Details:

Polina Chernomordik
SWAN UK Information Event Organiser
Genetic Alliance UK

Unit 4D, Leroy House

436 Essex Road


N1 3QP

T:  +44 (0)20 7704 3141 Ext. 106

F:  +44 (0)20 7359 1447


SWAN UK (Syndromes Without A Name) is running its first 'Undiagnosed Genetic Conditions Information Event' on the morning of 26th of November at Great Ormond Street Hospital, London. -The event will bring together health professionals and parents and carers of children with undiagnosed genetic conditions to share information and increase awareness of why some children remain undiagnosed, the issues this causes for their families and what support is available to them. -The event will increase learners' awareness and understanding of undiagnosed genetic conditions, review why diagnosis can be a lengthy process for some children, and identify why some children remain undiagnosed. The event will provide information about the genetic testing options available for undiagnosed children, both via NHS routes and through research and will examine what the emergence of technologies such as next generation sequencing may bring to the management of undiagnosed children. -The event will identify the key issues faced by families of children with undiagnosed genetic conditions and will provide learners with information and knowledge on how to support families of children with undiagnosed genetic conditions, including how to refer them to specialist support groups so that families can receive on-going direct information and peer support.