“Having lost family to aneurysms, including my mother and grandmother to brain aneurysms, and having undergone treatment for a brain aneurysm myself, I founded HBA Support in 2020, along with my sister, Emma. Right from the start of my journey, I realised there was a real lack of helpful and reliable information – and I knew this was an issue that others must be facing too. I set up HBA to support and inform people living with familial brain aneurysms and raise awareness of the condition as a rare disease, representing the lived experience and improving and saving lives."
"As a rare disease patient, I have more than five years as a patient advocate and communicator. After undergoing NHS genetic testing in 2015 without success, I joined the ground-breaking Genomics England’s 100,000 Genomes project. Soon after that, I joined its Participant Panel as a founding member and now sit as Vice Chair of the Participant Panel. The panel is tasked with ensuring the interests of participants are always at the forefront of the organisation's work, representing rare disease and cancer patients' interests and impacting clinical design and policy.
I have recently sat on the oversight committees for two major public dialogue programmes examining public attitudes to genetics in newborn screening and society’s attitudes to genetic testing in the NHS today. I’m currently sitting on the steering group of the Newborn Genomes Programme, a co-designed an NHS-embedded research study to explore the benefits, challenges, and practicalities of sequencing and analysing the genomes of newborns. I’m also chairing a working group for the study which is looking at recruitment, branding, communication and dialogue with expectant parents and their families. As a PR and communications professional and ex-journalist with over 20 years’ experience, I’m also passionately committed to open, understandable and transparent patient communications and delighted to use my experience within this setting."
Hear Rebecca talk more about her story, the development of HBA Support and her role as part of a patient panel with Genomics England on its G Word Podcast:
Rebecca also appeared on BBC Radio 4’s Woman’s Hour, sharing her personal story and her involvement with the NHS Newborn Genomes Programme:
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