Fareham Shopping Centre is supporting the children’s charity SWAN UK in 2016

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

SWAN UK has three aims:

    • Develop and support a community of families of children affected by undiagnosed genetic conditions.
    • Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.
    • Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.

For many families, having no diagnosis or prognosis for their child can be challenging and often isolating.

We are working closely with the families that we support and have developed five themes we will focus on when developing services to meet their needs:

  • Advocacy and Practical Support
  • Awareness
  • Community
  • Information
  • Research and Policy

The current support that we provide includes:

  • An active online forum, offering peer to peer support.
  • ‘Family fun days’ and local meet ups, providing families with a chance to meet, share experiences and take time out together.
  • Leaflets, updates and newsletters, which include experiences from members and news of opportunities to be involved in research.
  • Our newly launched ‘local networks’ project, training volunteers from the SWAN UK community and developing on the ground support in their area.
  • Working with healthcare and other relevant professionals to highlight the challenges faced by families of children with undiagnosed genetic conditions.

 

To find out more about SWAN UK visit:

General Enquiries

Fareham Shopping Centre
Management Office, 28 Thackeray Mall
Fareham, Hampshire, PO16 0PQ.

Tel: 01329 822 506
Email: enquiries@farehamshopping.com

facebook twitter Email Fareham Shopping Centre