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July 2022 Support Group Meeting (Webinar)

4/20/2022

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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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May 2022 Support Group Meeting (Webinar)

4/20/2022

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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
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Podcast with Rare Mamas Rising

4/20/2022

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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.
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Support Group Meeting Notes (Nov 6, 2021)

2/28/2022

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March 2022 Support Group Meeting (Webinar)

2/28/2022

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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
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The Balancing Act - Behind the Mystery TV series - Rare Disease Day 2022

2/28/2022

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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.
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Save the Dates for 2022 Meetings!

1/1/2022

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2022 Meeting Dates
  • January 8th
  • March 5th
  • May 14th
  • July 9th
  • September 10th
  • November 5th
See you in 2022.
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November 2021 Support Group Meeting (Webinar)

11/1/2021

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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
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September 2021 Support Group Meeting (Webinar)

9/1/2021

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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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Support Group Meeting Notes (July 16, 2021)

8/4/2021

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