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Case Study: Hereditary Brain Aneurysm (HBA) Support
Interview with Rebecca Middleton
Rebecca Middleton is a patient advocate affected by hereditary brain aneurysms (HBA).
In this video, Rebecca talks about identifying her rare disease, and its impact on her family. She explains how this drove her to set up her patient charity, HBA Support, and discusses recent initiatives where they have been able to partner with international experts to help shape research into this life-threatening condition.
Further details about HBA and the ROAR study mentioned in the video can be found here:
Reflection
What would you need to be the “heart and brain” of research in your area? Why?
This article is from the online course:
The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making
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This article is from the free online
The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making
