Jobs at Genetic Alliance UK

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SWAN UK Information and Support Officer

Job title: SWAN UK Information and Support Officer
Employer: Genetic Alliance UK Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999
Responsible to: Assistant Director
Based at: Unit 4D, Leroy House, 436 Essex Road, London N1 3QP.
Term: 2 year fixed term contract, subject to 12 week probationary period
Salary: Up to £30,596 (dependent on experience) plus employer’s pension contribution

Genetic Alliance UK is the national charity of over 160 patient organisations supporting all those affected by genetic conditions.

SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering information and support to families of children with undiagnosed genetic conditions.

We are looking for a talented communicator to continue developing our SWAN UK project, providing information and support for families with children with undiagnosed genetic conditions. This project is based on mutual support, sharing knowledge, experiences, difficulties and solutions, with service-users playing a key role in developing the community.

About 30-50% of children with severe learning disabilities have no definite diagnosis for their condition. Many of these children have severe physical and/or learning disabilities and without a name for the condition, their families often experience extreme difficulty accessing the information, care and services that their children need.

The SWAN UK Communication and Information Officer will be responsible for:

  • Maintaining and developing a community of families with children with undiagnosed conditions.
  • Gathering and sharing information about undiagnosed conditions.
  • Developing links with health and social care professionals.
  • Increasing awareness and understanding of undiagnosed genetic conditions amongst health and social care professionals and the general public.

A full job description is available here or telephone +44 (0) 20 7704 3141 to request a hard copy by post.

Application deadline 9am, 27th March 2014. Interviews to be held 2nd April 2014.

Please submit an application letter and your CV to Nick Meade, either by email at or by post to Nick Meade, Genetic Alliance UK, Unit 4D, Leroy House, 436 Essex Road, London, N1 3QP. Please state where you first saw this job advertised.

For more information about SWAN UK and Genetic Alliance UK please see www.geneticalliance.org.uk and www.undiagnosed.org.uk