Genetic Alliance UK in Wales:
Education: Telling Stories - Understanding Real-Life Genetics
Genetic Alliance UK is a team member for this project which educates and informs nurses, midwives and health visitors appropriately about genetic conditions and the impact a condition can have on the life of their patient and their family. 'Telling Stories' a freely available website is a collection of stories from individuals, families, and health professionals from around the UK talking about the impact and effect a genetic condition has had on them.
The project is led by University of Glamorgan, in conjunction with the University of Plymouth, the Wales Gene Park and is hosted by the National Genetics Education Development Centre. The project was initially funded by a Wellcome Trust People Award grant.
Genetic Alliance UK was involved throughout the development of the project and had a critical role in facilitating the opportunity for its member groups to participate in the project by inviting them to share their experience either by video or written story. The website was successfully launched in 2007 and there are over 100 stories available on the site at present.
However, the aim is to continue adding to the website with ever-more stories about different conditions from various people. If you would like to share your story, or find out more about the website itself, then visit: www.geneticseducation.nhs.uk/tellingstories or contact Buddug Williams.
Jon Snow (Channel 4 news anchor) officially launched the website and is here discussing the project with team members and story tellers in summer 2007.