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"Speeding Up the Diagnosis Process," by Zhandong Liu

January 21, 2025

Scientist Zhandong Liu uses AI to speed up the diagnosis process.

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Tags genetics, genetic testing, improving diagnosis, genetic disease, research network, research agenda/strategy

"The Gift," by Gareth Baynam

January 21, 2025

Three Aboriginal children hold the key for unlocking important medical insights.

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Tags genetic disease, genetic testing, research agenda/strategy, drug repurposing, patient-driven research

"Figuring Out Who I Am," by Katie Stevens

January 21, 2025

Having become a mother at 18, this is supposed to be the year Katie Stevens figures out who she is — but then she discovers her 12-year-old son is terribly ill.

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Tags parenting a child with rare disease, genetic testing, genetics, research network, patient-driven research

"The Family Curse," by Allison Peck

January 21, 2025

Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.

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Tags genetic disease, living with a rare disease, patient-driven research, genetic testing, genetics, building a rare disease foundation

"Never Giving Up, One More Time ," by Nikki Stusick

June 14, 2024

Science evolving is a good thing, but it’s not always the answer you hope for.

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Tags parenting a child with rare disease, genetic disease, improving diagnosis, genetics, genetic testing, patient-driven research, building a rare disease foundation, social media/disease awareness

"Thankful," by Riley Blevins

April 23, 2024

Riley Blevins went to work for Cure HHT in hopes of helping his son. But turns out, he wouldn't be the one doing the saving.

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Tags parenting a child with rare disease, living with a rare disease, genetic disease, improving diagnosis, genetics, genetic testing

"Giving Up," by Heidi Wallis

April 23, 2024

This is the story of a type-A rare disease mom who tries for years, but can't undo her daughter's brain damage, so she sets out to stop other children from facing the same fate, and learns in the interim that "giving up" is just what you need to do sometimes.

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Tags parenting a child with rare disease, genetic disease, improving diagnosis, genetics, genetic testing

"The Day My World Changed," by Maddison Hall

April 22, 2024

After dreams of a perfect parenthood, Maddison was thrown into the rare disease world and became an unexpected advocate for her daughter and others in the Glut1 Deficiency Community.

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Tags parenting a child with rare disease, improving diagnosis, genetics, genetic testing

"Super Bowl Sunday: Diagnosis Day," by Erin Coller

April 18, 2024

After a year of seeking answers and a diagnosis for her toddler son’s delays and seizure, Erin Coller shares how, one Super Bowl Sunday, a phone call from the neurologist changed their lives forever.

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Tags parenting a child with rare disease, genetics, genetic testing, improving diagnosis

"Wrestling with an Estranged Father's Legacy," by Jeff Levenson

April 18, 2024

In an unexpected twist of where he thought his life would take him, Jeff finds one of his greatest purposes in life raising awareness of and helping find therapies for rare diseases.

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Tags genetics, genetic testing, genetic disease, patient-driven research, research agenda/strategy, improving diagnosis, building a rare disease foundation

"Heart vs. Brain," by Cassi Friday

April 18, 2024

A scientist used to compartmentalize as a way of emotional preservation but learned to harness the anxiety that comes with being a rare disease caregiver to help patients with her children's rare disease.

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Tags parenting a child with rare disease, genetics, genetic testing, genetic disease, improving diagnosis

"The Journey Is Just Beginning," by Carmen Camacho

April 18, 2024

Carmen Camacho's story spans decades, but her journey is just beginning.

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Tags genetic disease, living with a rare disease, genetics, genetic testing

"How My Bad Dating History Led to Me Being a Rare Disease Advocate," by Becky Nieves

April 16, 2024

Do you know what happens when a Type A fixer turns into a rare disease mom warrior? Then have a listen!

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Tags genetic testing, genetics, genetic disease, parenting a child with rare disease, scientific conference, community engagement

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UPcoming Shows

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New York, NY - Self Discovery
Jul 14
Jul 14, 2025
New York, NY - Self Discovery
Jul 14, 2025
Jul 14, 2025
Los Angeles, CA - Don't Panic
Jul 17
Jul 17, 2025
Los Angeles, CA - Don't Panic
Jul 17, 2025
Jul 17, 2025

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