In the second episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Dan and Patricia Lewi. Dan and Patricia have become leaders in patient advocacy in the Tay-Sachs community after their daughter Amelie was diagnosed with this rare condition at a young age in 2011. Dan and Patricia started the Cure & Action for Tay Sachs (CATS) Foundation only three months after Amelie's diagnosis and have been instrumental in bringing the disease community together as well as supporting research efforts by establishing a global patient registry and European consortium for Tay Sachs. Dan is also the head of business development at Pulse Infoframe and is a member of the senior management team. Joshua, Dan and Patricia discuss their diagnostic journey with Amelie, what motivated them to become so involved in patient advocacy and best practices for other advocacy groups who want to be part of research.
This is the second episode in our series about rare epilepsy. Click the chapters tab for timestamps that will bring you to different topics of discussion. Thank you for joining us for our second episode and we are excited to make you part of the conversation. To learn more about Pulse Infoframe visit our website at www.pulseinfoframe.com or check out our social media pages below to stay up to date on "Real Talk Real-World Data".
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