‘Journey of Hope’ is a short film offering a glimpse in to the lives of families where children have received a rare genomic diagnosis. In a world where labels and diagnosis are often framed negatively, this film highlights the reality of both the search for a diagnosis and the impact of the diagnostic moment. Above all else it compels us to think about the power of genetic diagnosis to reframe how we view our relationships, how we understand each other and most significantly, how a different kind of ‘hope’ is possible.
EJP RD has met the “Same but Different” patient group at the ECRD online conference and we are happy to share this film with you all because as they state on the Twitter Profile “We use the arts to encourage people to look beyond the label of rare diseases and disability and see the person behind the condition” and we believe on this being very true.