Rare Care Chronicles

Rare Care Chronicles

Episoden

Igniting Hope Through Research
15.07.2024
16 Minuten
Listen to Dr. Sam Mackenzie talk about what is happening now behind the scenes and the progress being made with TANGO2 deficiency disorder. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 de...
Between Hope and Fear
15.07.2024
28 Minuten
Between Hope and Fear: Facing a Potential Diagnosis with a New Pregnancy Meet Jake's parents and Erling's dad. Both Jake and Erling live with TANGO2 deficiency disorder (TDD). In anticipating another pregnancy, how did they cope with the fe...
Uncharted Youth: Caregiving in the Teen Years
15.07.2024
15 Minuten
John was diagnosed with TANGO2 deficiency disorder when he was a teen. His dad, Cesar joins us to answer questions and share with us what it's like to be a caregiver for teen. About the TANGO2 Research Foundation: Our mission is to lead the...
Beyond the Diagnosis
15.07.2024
41 Minuten
A doctor's Heartfelt Recollection of Heartbreak to Hope. An interview with TANGO2 Research Foundation’s Co-Founder Kasha Morris and Dr. Cheyenne Beach’s experience with TANGO2. They discuss Dr. Beach’s experience with the Morris Family, and w...
Nurturing Gratitude: A Journaling Guide for Caregivers
11.07.2024
29 Minuten
Amanda Hull is from Suffolk in England. She and husband, Daniel, have three boys; Joe, Sebby and Walter. Sebby is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. Amanda has worked as an Educational Psychologist for the past 18 years, a...

Über diesen Podcast

Rare Care Chronicles is a podcast series by the TANGO2 Research Foundation covering many topics including rare disease care, research, and experiences.

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"Igniting Hope Through Research"
"Rare Care Chronicles"
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15
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"Igniting Hope Through Research"
"Rare Care Chronicles"