When we began the project in January this year, our overarching objective has always been to significantly raise the profile of EDS as the struggle both in the UK and worldwide seems to focus on a difficulty receiving an initial diagnosis and subsequent treatment. There are 13 forms of this illness which translates into significant numbers of sufferers worldwide, however, so little is spoken about Ehlers Danlos in general and the condition is often overlooked by medical professionals. Patients present with symptoms including extreme hypermobility throughout the body, stretchy skin etc which are key indicators of EDS. Rather than acknowledging these obvious markers, they are frequently told it’s in their heads or simply misdiagnosed. The horrendous pain and other life changing symptoms most individuals deal with on a daily basis are often ignored. It took years for Aurora, one part of TEM-PLE, to get a diagnosis and this needs to change.