Search a title or topic

Over 20 million podcasts, powered by 

Player FM logo
Artwork

Content provided by Effie Parks. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Effie Parks or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.
Player FM - Podcast App
Go offline with the Player FM app!

GeneDx Launches Cerebral Palsy Genetic Testing Pillar & Discover Snapshot: For Deeper Insights and to Help You Grow Your Patient Community – with Gay Grossman

32:49
 
Share
 

Manage episode 480034123 series 2918477
Content provided by Effie Parks. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Effie Parks or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

In this episode of Once Upon a Gene, I’m joined again by rare mom and powerhouse advocate Gay Grossman. Gay works at GeneDx—home to one of the largest clinical genomic databases—and she’s here to share two exciting updates that could change everything for rare families and patient advocacy orgs.

We talk about:

  • GeneDx’s new commitment to the cerebral palsy community and why every CP diagnosis deserves a genetic test

  • How families can access exome and genome testing through telehealth

  • The launch of the Discover Snapshot, a tool designed to help rare orgs find, understand, and grow their communities using real genomic data

We also dive into why many CP, autism, and epilepsy diagnoses are just the beginning—and how getting to the root cause can open doors to treatments, clinical trials, and life-changing connection.

🔗 Resources & Links:

Key Topics:

  • Genetic testing access and equity

  • Ending the diagnostic odyssey for CP

  • Empowering patient advocacy orgs with data

  • How to use genetic diagnoses to unlock treatment options

  • The power of community and connection

  continue reading

337 episodes

Artwork
iconShare
 
Manage episode 480034123 series 2918477
Content provided by Effie Parks. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Effie Parks or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

In this episode of Once Upon a Gene, I’m joined again by rare mom and powerhouse advocate Gay Grossman. Gay works at GeneDx—home to one of the largest clinical genomic databases—and she’s here to share two exciting updates that could change everything for rare families and patient advocacy orgs.

We talk about:

  • GeneDx’s new commitment to the cerebral palsy community and why every CP diagnosis deserves a genetic test

  • How families can access exome and genome testing through telehealth

  • The launch of the Discover Snapshot, a tool designed to help rare orgs find, understand, and grow their communities using real genomic data

We also dive into why many CP, autism, and epilepsy diagnoses are just the beginning—and how getting to the root cause can open doors to treatments, clinical trials, and life-changing connection.

🔗 Resources & Links:

Key Topics:

  • Genetic testing access and equity

  • Ending the diagnostic odyssey for CP

  • Empowering patient advocacy orgs with data

  • How to use genetic diagnoses to unlock treatment options

  • The power of community and connection

  continue reading

337 episodes

All episodes

×
 
Loading …

Welcome to Player FM!

Player FM is scanning the web for high-quality podcasts for you to enjoy right now. It's the best podcast app and works on Android, iPhone, and the web. Signup to sync subscriptions across devices.

 

Listen to this show while you explore
Play