Webinar: Empowering Patients: Co-Designing Clinical Trials for Better Outcomes

 Mindy Cameron is a long-time advocate for patient-centered research in neuromuscular and rare disease communities. As the President of AdvocacyWorks Consulting, Mindy helps non-profit and industry colleagues develop research and clinical trial initiatives that work for all stakeholders, with a particular focus on the most important participants in clinical research…patients and their caregivers. She has the personal experience to back up her professional expertise, as she and her son, who lives with Duchenne muscular dystrophy, have participated in nearly a dozen research studies and clinical trials over the past 20 years. Mindy serves as a patient advisor to the Critical Path Institute’s Duchenne Regulatory Science Consortium and is a member of the American Academy of Pediatrics Muscular Dystrophy Public Health Consortium. She is also an active member of the EveryLife Foundation’s regulatory and access working groups, as well as the Rare Disease Advisory Council for the State of Indiana.She is a frequent speaker on a range of topics relevant to clinical trial design, including patient data return, data sharing, accessibility at clinical trial sites, patient preferences and lived experiences, and post-approval access and reimbursement challenges.

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Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in all types of research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $15 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.

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