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
The Rare Mamas Rising podcast is where rare mamas find community and support from one another by sharing their stories, advice and hope. In this podcast, Caroline talks to writer, speaker, advocate and rare disease mom, Nikki McIntosh about the resources for those still on the long journey of seeking a diagnosis for their child.
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 |
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