Shelley Simmonds, Louise Fish and Amanda Pichini: How can we support complex patient journeys?

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."