When: Saturday 9 July 2022 10:30AM - 11:45AM PT
Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Tracy Dixon-Salazar, PhD Executive Director Lennox-Gastaut Syndrome (LGS) Foundation Uncontrolled Seizures, Intellectual Disability, and Resources Available from the LGS Foundation
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When: Saturday 14 May 2022 10:30AM -11:45AM PT
Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Jeanne Kane, MA H.E.A.L. Educational Therapist [Hospital Educational Advocacy Liaisons] Stanford Children's Health When: Saturday 19 March 2022 10:30AM - 11:45AM PT
Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Kiely Law, M.D. M.P.H. Director of Research Operations, SPARK Simons Foundation SPARK: Accelerating Autism Research Together The Balancing Act - Behind the Mystery" is a TV series on the Lifetime channel that brings to light the struggles and strengths of rare disease patients and their families. Expanding awareness and education for the rare disease community. Caroline, is one of three courageous rare moms interviewed for this Rare Disease Day Special 2022 marking Rare Disease Day 28 February 2022. 2022 Meeting Dates
When: Saturday 06 November 2021 10:30AM – 11:15AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Alyssa Mendel, Project Manager The CoRDS Registry at Sanford When: Saturday 04 September 2021 10:30AM – 11:15AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Speakers: Dr. Friedman and Dr. Wigby Rady Children’s Institute for Genomic Medicine Rare Disease in General and Precision Medicine Clinic When: Friday July 16, 2021, 2PM-2:45PM PT Where: Via Webinar (Email CureUndx@gmail.com to receive webinar link) Kim M. Hager, LICSW and Maria Martinez Calderon, LMHC Children’s Friend, Inc. Holding onto Hope: Finding Practical Ways of Getting Support When: Saturday 6 March 2021 10:30AM – 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Shikha O’Brien, Director of Business Development, Rare Genomics Institute RareWear Program and Patient Research Services [pro-bono re-analysis] When: Saturday August 8, 2020, 10AM - 12PM PT Where: Via Webinar (Email sdusfg@gmail.com to receive webinar link) Maria Fernanda Iriarte, Senior Attorney Social Security Disability Insurance and Supplemental Social Security Income, An attorney discussion |
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