Telling Stories is a UK based project centered on providing NHS (National Health Service, UK) health care professionals a broader education in genetics since it can be difficult for them to make the link between what they are taught and how this relates to the people they may be looking after. We know that hearing real stories about people’s experiences can make a difference in helping them to understand genetics. This project gathers real life stories from the public and professionals to show the impact genetic conditions have on real life. The stories are set in an education framework on a dedicated website. Many health professionals from across the world are visiting the site and find it very helpful as an education resource. We believe the site is helping health care professionals to gain a better understanding of genetics in practice and more stories are needed in order to further enhance the site.
The project currently has no stories from people with Birt Hogg Dube syndrome! If you are interested in sharing yours, and would like more information on particpating please visit here or email: Dr Rhian Morgan