Speakers

Carole is a patient with chronic and genetic rare disease, Patient Partner, Expert Patient, Patient Speaker, Author and Researcher. She is the CEO & Co-founder of FibroFlutters Patient Advocacy Organisation for chronic / rare illnesses. Helping to develop, nurture and advocate for a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need. Carole utilises varying social media platforms to support people with Chronic illness & Rare Disease, #notjustpatients, and with a multi-stakeholder following. A network used for raising disease awareness and sharing as much up to date information. Carole also advocates for patientcentricity, especially patient engagement best practices and the need for patients to be included within research at early development / preclinical phases. She recognises the need to help educate patients about clinical trials and the reason why they should get involved. Recently as a Patient, and with FibroFlutters, was a team member of an initiative to create: ‘How-To guide’. How to implement Patient Engagement into Early Development and Preclinical phases with Patients Focused Medicines Development.