Sep 27, 2023 | PAST WEBINARS
Webinar Details Title: Spark Therapeutics Webinar: Trail Expectations – What to Expect Date: Wednesday, September 27, 2023 Time: 1 PM CT / 2 PM ET Speaker:Jacose Bell Webinar Overview:This presentation, developed by Spark Therapeutics, takes audience members...
Aug 10, 2023 | PAST WEBINARS
Webinar Details Title: New insights into Pompe disease since the advent of NBS Date: Thursday, August 10, 2023 Time: 1 PM CT / 2 PM ET Speakers:Dr. Priya Kishnani, MDErin Huggins, MS, CGC Webinar Overview:An overview of the lessons learned from newborn screening for...
Mar 28, 2023 | PAST WEBINARS
Webinar Details Title: When A Hospital and A Patient Organization Work Together & The Value of Patient Reported Outcomes Date: Tuesday, March 28, 2023 Time: 1 PM CT / 2 PM ET Speakers:Maudy Theunissen, MDNadine van der Beek, MD, PhD Presentation 1:Title: When A...
Dec 13, 2022 | PAST WEBINARS
Webinar Details Title: Insurance 101: Learning the Basics Date: Tuesday, December 13, 2022 Time: 1 PM CT / 2 PM ET Speaker:Amy DeStefanis, LCSW, CCM Webinar Overview:Insurance 101 will guide the participants through a discussion of the main types of health insurance...
Sep 16, 2022 | PAST WEBINARS
Webinar Details Title: In Utero Enzyme Replacement Therapy for Lysosomal Storage Diseases Date: Friday, September 16, 2022 Time: 1 PM / 2 PM ET Speaker:Jeniffer L. Cohen, MD, Assistant Professor of Pediatrics at Duke University Webinar Overview:Dr. Cohen will provide...
Aug 26, 2022 | PAST WEBINARS
Webinar Details Title: Aquatic Exercise: Applications for Pompe Disease Date: August 26, 2022 Time: 1:30 PM CT / 2:30 PM ET Speaker:Dr. Kendra Lucas, PT, DPT, Aquatic Physical Therapist at Kettering Health, Ohio Webinar Overview:The unique properties of water provide...
Apr 11, 2022 | PAST WEBINARS
Webinar Details Title: POMPE REGISTRY: 18 YEARS OF LEADERSHIP AND CONTRIBUTIONS Date: Monday, April 11, 2022 Speaker:Joseph Bender, MD, MBA, Global Head of Rare Disease Registries Danielle Dong, ScM, CGC, Global Operations and Advocacy Lead Rare Disease Registries...
Jan 14, 2021 | PAST WEBINARS
Webinar Details Title: Informative Session on the Covid 19 Vaccine with Questions and Answers Date: Thursday, January 14, 2021 Speaker:Dr. Priya Kishnani Speaker Biography Dr. Priya Kishnani, MD Chief, Division of Medical Genetics, Department of Pediatrics; Professor...
Dec 9, 2020 | PAST WEBINARS
Webinar Details Title: National Patient-Teacher Registry: A New Educational Concept Date: Wednesday, December 9, 2020 Speaker:Mark Korson, PhD, VMP Genetics, LLC, Director of Physician Support, Director of Education Webinar Overview:In general, medical students and...
Oct 1, 2019 | PAST WEBINARS
Webinar Details Title: The common c.-32-13T>G splicing variant of GAA gene: from functional characterization to the identification of new therapeutic targets for Pompe disease. Speaker:Andrea Dardis, PhD **Due to a family emergency, Dr. Dardis was unable to present...
