"I know the power of a word, I know the power of a story, I know the power of a phrase, and language really is so meaningful and so valuable. […] Every data point has a face, there is a person there, it's not just a number, it's not just a code. Principle number two, treat people as you would like to be treated."
On today's episode, Chris Wigley is joined by Rebecca Middleton, Vice Chair of the Participant Panel and founder of Hereditary Brain Aneurysm Support (HBA Support). They discuss Rebecca's clinical and genetic journey, her participation in the 100,000 genome project and what that meant for her. They also discuss the difficulty of having a rare disease, how the lack of information can cause great loneliness and uncertainty and why Rebecca opened HBA Support in response.
Having lost family to brain aneurysms, and having undergone surgery for an aneurysm herself, Rebecca recently founded HBA Support and is establishing a patient-centred organisation to support patients and families living with familial brain aneurysm syndrome. For more information click here: https://hbasupport.org/