EP 126: Patient-led research for ultra-rare disease drug development with Julia Taravella, Executive Director of Rare Trait Hope Fund

The Genetics Podcast

Mar 14 2024 • 39 mins

In this episode, we welcome Julia Taravella, Executive Director of Rare Trait Hope Fund. She founded the organisation 11 years ago when her two children were diagnosed with aspartylglucosaminuria (AGU), an ultra-rare, autosomal recessive, and fatal neurodevelopmental disease. Tune in to learn about her goals for developing a gene therapy cure for the disease, her experiences as a mother raising two children with a terminal illness, and upcoming research developments for AGU.

You Might Like

Hidden Brain
Hidden Brain
Hidden Brain, Shankar Vedantam
Radiolab
Radiolab
WNYC Studios
Science Friday
Science Friday
Science Friday and WNYC Studios
StarTalk Radio
StarTalk Radio
Neil deGrasse Tyson
Sasquatch Chronicles
Sasquatch Chronicles
Sasquatch Chronicles - Bigfoot Encounters
Something You Should Know
Something You Should Know
Mike Carruthers | OmniCast Media | Cumulus Podcast Network
This Podcast Will Kill You
This Podcast Will Kill You
Exactly Right Media – the original true crime comedy network
Paranormal Mysteries Podcast
Paranormal Mysteries Podcast
Paranormal Mysteries | Unexplained Supernatural Stories
Tooth & Claw: True Stories of Animal Attacks
Tooth & Claw: True Stories of Animal Attacks
Wes Larson, Jeff Larson, Mike Smith | QCODE
Science Vs
Science Vs
Spotify Studios
The Confessionals
The Confessionals
Merkel Media
Blurry Creatures
Blurry Creatures
Blurry Creatures
Real Ghost Stories Online
Real Ghost Stories Online
Real Ghost Stories Online | Paranormal, Supernatural & Horror Radio