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Rare Care Chronicles – Details, episodes & analysis

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Podcast Rare Care Chronicles

Rare Care Chronicles

TANGO2 Research Foundation

Business

Frequency: 1 episode/39d. Total Eps: 9

Hosting podcast Spotify for Podcasters

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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Data updated on 04/07/2026

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Veronica and Tyson's Story

Friday, May 16, 2025 • Duration 28:51

Isabella Riezler, Science Communications Manager at the Chan Zuckerberg Initiative (CZI), volunteered her time and talents to support the TANGO2 Research Foundation by capturing the story of this year's Ambassador Family: the Swetek-Jones family.In this heartfelt video, Veronica and Tyson share their journey to find a diagnosis for their daughter, Thea, and how that path led them to create the TANGO2 Family Facebook group—a vital space offering connection, information, and support for families impacted by TANGO2 Deficiency Disorder (TDD) around the world.
_____________________________________________________________For more information, go to: https://tango2research.org/Find us on Facebook: / tango2research Find us on Twitter: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation

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"Can We Fix It?" by Kasha Morris

Tuesday, October 1, 2024 • Duration 13:59

This is a story about fixing an impossible problem in an unexpected way.

Kasha Morris is a retired teacher that co-founded the TANGO2 Research Foundation with her husband Mike in 2018 after a fifteen-year diagnostic journey for their son Ryan. Faced with the reality of a life-limiting ultra rare genetic condition they got to work to help their son. Although TANGO2 was newly discovered, their search would take them back twenty years to uncover some answers in an unexpected place.

To learn more, visit ⁠⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠⁠. Find us on Facebook: ⁠⁠ / tango2research ⁠⁠ Find us on X: ⁠⁠ / tango2research ⁠⁠ Find us on Instagram: ⁠⁠ / tango2researchfoundation ⁠⁠ Find us on LinkedIn: ⁠⁠ / tango2-research-foundation

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Igniting Hope Through Research

Monday, July 15, 2024 • Duration 15:42

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 deficiency disorder.

To learn more, visit ⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠. Find us on Facebook: ⁠ / tango2research ⁠ Find us on X: ⁠ / tango2research ⁠ Find us on Instagram: ⁠ / tango2researchfoundation ⁠ Find us on LinkedIn: ⁠ / tango2-research-foundation

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Between Hope and Fear

Monday, July 15, 2024 • Duration 27:53

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 fear of a possible TDD diagnosis with their 3rd child? Take a moment and listen to their story and their journeys of hope and fear.

About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit ⁠⁠⁠⁠www.tango2research.org⁠⁠⁠⁠. Find us on Facebook: ⁠ / tango2research ⁠ Find us on X: ⁠ / tango2research ⁠ Find us on Instagram: ⁠ / tango2researchfoundation ⁠ Find us on LinkedIn: ⁠ / tango2-research-foundation

Uncharted Youth: Caregiving in the Teen Years

Monday, July 15, 2024 • Duration 15:24

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 way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit ⁠⁠⁠www.tango2research.org⁠⁠⁠. Find us on Facebook: ⁠⁠ / tango2research ⁠⁠ Find us on X: ⁠⁠ / tango2research ⁠⁠ Find us on Instagram: ⁠⁠ / tango2researchfoundation ⁠⁠ Find us on LinkedIn: ⁠⁠ / tango2-research-foundation

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Beyond the Diagnosis

Monday, July 15, 2024 • Duration 41:10

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 what her involvement has meant to her and the community.

About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit ⁠⁠⁠www.tango2research.org⁠⁠⁠. Find us on Facebook: / tango2research Find us on X: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation

Nurturing Gratitude: A Journaling Guide for Caregivers

Thursday, July 11, 2024 • Duration 29:20

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, and discusses how to journal as an outlet for caregivers.

About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit ⁠⁠www.tango2research.org⁠⁠. Find us on Facebook: ⁠ / tango2research ⁠ Find us on X: ⁠ / tango2research ⁠ Find us on Instagram: ⁠ / tango2researchfoundation ⁠ Find us on LinkedIn: ⁠ / tango2-research-foundation

Rare Care: Reducing Distress & Embracing Well-Being

Thursday, July 11, 2024 • Duration 40:44

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, and discusses strategies for increased well-being for rare disease caregivers.

About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit ⁠www.tango2research.org⁠. Find us on Facebook: / tango2research Find us on X: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation

A Doctor's Discovery Ignites a Child's Legacy

Thursday, July 11, 2024 • Duration 26:12

Ann Geffen, Executive Director of the TANGO2 Research Foundation interviews Marcie Lopez (mom to our TANGO2 angel Sammy) and Dr. Seema Lalani. Marcie and Dr. Lalani share their experience on how Dr. Lalani became the first person to recognize TANGO2 deficiency disorder and why she decided to get involved with the Foundation.

About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.

To learn more, visit www.tango2research.org. Find us on Facebook: / tango2research Find us on X: / tango2research Find us on Instagram: / tango2researchfoundation Find us on LinkedIn: / tango2-research-foundation