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Five in Fifteen PWSA | USA Federal Public Policy Webinar Series – Part 2

October 5, 2020 @ 12:00 pm - October 9, 2020 @ 12:30 pm

Title: Access to Genetic Counselor Services Act of 2019 (H.R. 3235)
Date: Monday, October 5
Time: 12:00-12:15 PM Eastern
Description: Learn more about how H.R. 3235 will allow Medicaid and Medicare beneficiaries to be seen by genetic counselors, ensuring that they receive the benefits of the rapidly advancing field of medical genetics in a timely, cost-effective, and professional manner.
Registration: https://us02web.zoom.us/meeting/register/tZIpduiqpj8oE9TYqxPyiVVbk8fHbkQXYtv_

Title: Advancing Access to Precision Medicine Act (H.R. 4393)
Date: Tuesday, October 6, 2020
Time: 12:00-12:15 PM Eastern
Description: Learn more about how H.R. 4393 will ensure that children and young adults living with an undiagnosed condition will have access to DNA sequencing clinical services that are currently out of reach to provide a timely and accurate diagnosis.
Registration: https://us02web.zoom.us/meeting/register/tZIpduyhqj0sHdDn5j-6F8upLWnk6WbATQpD

Title: Creating Hope Reauthorization Act of 2019 (H.R. 4439 / S. 4010)
Date: Wednesday, October 7, 2020
Time: 12:00-12:15 PM Eastern
Description: Despite the significant unmet medical need, pharmaceutical companies have been reluctant to develop drugs for PWS, since the high costs are unlikely to be recouped following approval. Learn more about how the Creating Hope Act will make novel therapies for pediatric rare diseases a priority.
Registration: https://us02web.zoom.us/meeting/register/tZMtf-yupjktGtGGlVKmBFghIt_c_Y22Fqo0

Title: Helping Experts Accelerate Rare Treatments (HEART) Act of 2020 (H.R. 7567)
Date: Thursday, October 8, 2020
Time: 12:00-12:15 PM Eastern
Description: Many medical experts in PWS clinical trials have never treated PWS patients or had much experience with the disease. If passed, this legislation would ensure that PWS experts and patients are more involved in the US drug review process.
Registration: https://us02web.zoom.us/meeting/register/tZEudOqvpjIoHNBxGey6F28-yUsjaDvc3zXM

Title: PWS Awareness and Education
Date: Friday, October 9, 2020
Time: 12:00-12:15 PM Eastern
Description: Effective advocacy is essential to ensuring health, safety, and enhanced quality of life for those affected by Prader-Willi Syndrome. Learn how to raise awareness amongst your public and elected officials to guarantee the passage of legislation and regulations that help your community.
Registration: https://us02web.zoom.us/meeting/register/tZAvcOitqj4pHdG00WMmfUv7oG2kCHFqFBFo


October 5, 2020 @ 12:00 pm
October 9, 2020 @ 12:30 pm
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