Patient Involvement and Advocacy Partners
Cardiomyopathy UK is the UK’s national charity for people affected by cardiomyopathy, providing support and information services, working to raise awareness, and campaigning for better access to quality treatment. The charity works to promote research and participation in research and is supporting patient self-enrolment via social media. The charity will provide patient insight for this project and promote patient involvement to relevant individuals via its extensive database of service users and its wider network.
SHaRe is an international repository of clinical and laboratory data on individuals and families with genetic heart disease. Developed as a collaboration amongst leading cardiovascular genetics centers and funded by MyoKardia, SHaRE brings together patients and cardiovascular geneticists from the US, Europe, Australia, Iceland, and South American to advance diagnosis, treatment and cures for cardiomyopathies. Wendy Bosari, lead Patient Advocate, heads the patient portal of SHaRE, through which she manages an informational website and directs 'Affairs of the Heart' patient conferences that engage patients in clinical and research updates and advocacy. We will harness SHaRE to both inform and seek input from patients on strategies, risks, and opportunities for genetic treatments of cardiomyopathies.