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"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

"Piece By Piece," by Kit Donahue

January 21, 2025

After witnessing the disconnect between researchers and families struggling with mental illness, Kit Donohue is determined to bridge the gap between science and the people it aims to help.

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Tags patient-driven research, research network, research agenda/strategy, scientific conference

"A Picture Frame," by Axel Lankenau

January 21, 2025

When Axel Lankenau is told that both of his sons have an ultra-rare, life-limiting neurological disorder, he is forced to confront a future he never imagined.

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Tags parenting a child with rare disease, building a rare disease foundation, research network, patient-driven research

"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

"Finding Confidence," by Tanya Brown

April 22, 2024

Scientific Director Tanya Brown shares her story of growing in confidence as a scientist, inspired by her mother's resilience and perseverance.

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Tags patient-driven research

"That 'Spinning Room' Moment," by Jill Kiernan

April 18, 2024

This is a story about one family's rare disease journey and the birth of a community.

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

"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

"Navigating a World Not Built for Us," by Avery Roberts

April 16, 2024

Avery Roberts is breaking down barriers tackling misconceptions surrounding disability and giving a loud voice to the, often-forgotten, rare disease community.

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Tags living with a rare disease, community engagement, social media/disease awareness, patient-driven research

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UPcoming Shows

Featured
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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