In this episode of the G Word, Shelley Simmonds, member of the Participant Panel at Genomics England, speaks to Louise Fish, CEO of Genetic Alliance UK), and Amanda Pichini, clinical lead for genetic counselling for Genomics England, to discuss how the patient journey has changed over the last 10 years for those living with rare conditions.
This year, we're celebrating our 10-year anniversary, and in this special episode our guests will delve into how we can continue to strengthen the relationships between Genomics England and charities such as Genetic Alliance, and we will explore the significance of these partnerships in transforming the landscape of support for individuals with genetic conditions.
You can read the transcript here: Supporting-complex-patient-journeys.docx)
"Our challenges as charities is both to help shape the research and to help make sure that the research is addressing the things that matter most to people with living with rare genetic conditions and their families, but also to make sure that the benefits of that research actually reach patients and their families and really improve people's lives in the longer term."
