Jamie Ring
Patient Advocate, Biotech Industry
![Everyone who participates in rare disease research is a medical hero](https://i.ytimg.com/vi/j4bsnbHC6WY/maxresdefault.jpg)
Everyone who participates in rare disease research is a medical hero
In this video, a patient advocate in biotechnology talks about how the families who participate in research are pioneers and medical heroes. Patients’ willingness to take the risk and contribute is the only way forward research. “We (biotech) can build a rocket ship to take us to space, but we can’t fly it. We need a volunteer.”
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Everyone who participates in rare disease research is a medical hero
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Understanding the Why Behind Inclusion and Exclusion Criteria
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The hard truth is that not everyone will qualify or meet the inclusion criteria
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Informed consent. Take it seriously.
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Balancing hope and realistic expectations in clinical trials.
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Managing Expectations: Trials are a learning process and timelines change
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Clinical Trials: A Strong, Unified Disease Community Helps. Stay active and engaged, even if your subgroup doesn't yet have a therapy.
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Trial Participation, balancing risk and reward, hope and expectation, commitment and community
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The Personal aspects of a clinical trial, including relocation and the impact on other children
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Should I participate in a clinical trial?
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How can I best advocate for my child?
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Community input is valued but every trial design is unique
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The role of a Patient Advocate at a biotech company
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A Patient Advocate explains the Placebo controlled trial.
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Endpoints and the patient perspective in designing trials
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For the patient that doesn't qualify, there are other ways to participate
Made possible by a grant from:![Sponsor Logo](https://api.courageousparentsnetwork.org/app/uploads/2020/02/SANOFI_Genzyme_RVB.jpg)
![Sponsor Logo](https://api.courageousparentsnetwork.org/app/uploads/2020/02/SANOFI_Genzyme_RVB.jpg)