Gene mutation didn't slow down high school senior

By Eryn Brown

How Genome Sequencing Creates Communities Around Rare Disorders

By Ed Yong


Family hopes genome test will

help cure girl's mystery disease

By Eryn Brown

​ADCY5 Patient Featured in NATIONAL MEDIA

“We Gained Hope.”

The Story of Lilly Grossman’s Genome

By Ed Yong

  • International ADCY5  Registry
  • Support
  • Treatment
  • Research
  • Outreach
  • Fundraising

ADCY5.org Focus


Multiple disciplines to solve the Puzzle

From citizen scientists to world-renowned Ph.Ds., the ADCY5.org team has expertise in precision medicine, neurology, genetics, genomics, bioinformatics, statistics, clinical research,  drug discovery, genetic counseling, neonatal care, biology, chemistry, IOT, wearables, web development, software development, finance, training, non-profit management, and most importantly, patient support.  

SEASONED ADCY5.org Team

The ADCY5 team is coming together to build knowledge and collect information

ADCY5 patient stories

Dive deeper into the medical & scientific details

Overview of how an ADCY5 Mutation affects people 

For Docs & researchers

ADCY5.org

PATIENT REGISTRY


ADCY5 paTIENTs IN THE NEWS

ADCY5 DESCRIPTION