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When: Saturday 7 November 2026 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Elizabeth K. Green Attorney at Law, Green Health Law Topic When Health Claims Are Denied: ERISA Guidance & Strategies
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When: Saturday 19 September 2026 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Jennifer McLelland Director of Policy for Home & Community Based Services Topic How Medicaid Cuts Due to HR-1 Will Impact the Rare Disease Community UPDATE: The June meeting has been canceled. See you in September! When: Saturday 20 June 2026 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Jessica Patay Founder and Executive Director, We Are Brave Together Topic Key Practices for Caregiving Parents When: Saturday 28 March 2026 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Michele Herndon Undiagnosed Diseases Network Foundation Topic UDNF-Support is Here! 2026 Meeting Dates
When: Saturday 15 November 2025 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Dr. Wenhui Laura Li, Ph.D Help Undiagnosed Children Foundation Topic Solving the Negative Cases: Ending Diagnostic Odysseys Through Genomic Data Re-analysis When: Saturday 20 September 2025 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Rob Moss Co-Founder Seizure Tracker™ Topic Seizure Tracker: Easily collect and share seizure related data within the care team and improve outcomes When: Saturday 19 July 2025 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Kim Hindery Executive Director Child Neurology Foundation Topic Building a Wrap-Around Community of Support When: Saturday 17 May 2025 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Tracy Cole Expert Research and Drug Discovery Consultant Tracy Cole Consulting Topic An Overview of Approaches to Developing Therapeutics When: Saturday 15 March 2025 10:30AM - 11:45AM PT Where: Via Zoom (Email [email protected] to receive meeting link) Speaker Jonathan Cottor CEO/Founder National Center for Pediatric Palliative Care Homes Topic A Chance to Rest: Scaling Community Based Children's Care Homes |
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