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Global Genes

A total of 353 posts are filed under Global Genes
The Potential for Digital Health Technologies to Transform Clinical Trials
LBSL, a rare genetic disorder that affects the brain and spinal cord, was first identified in 2004. While there are no treatments available… Continue Reading
Now Comes the Hard Part
Earlier this month during Novartis’ R&D Day, Dave Lennon caught the attention of the payer community when he said that the company’s… Continue Reading
Matching Volunteers to Rare Disease Organizations in Need
Many rare disease organizations are resource constrained and depend on the kindness of volunteers to provide specialized services and… Continue Reading
Teens Want a Say about Their Genetic Information
When my wife became pregnant with our first child, the technician performing the ultrasound asked if we wanted to know the sex of the child.… Continue Reading
McGill University Medical Student Named Recipient of Cox Scholarship for Rare Compassion
Rare Daily Staff Global Genes named medical student Kristin Hunt as the 2018 David R. Cox Scholarship recipient Launched in 2015, the David… Continue Reading
How One Rare Disease Organization Used Technology to Provide Greater Patient Insight to FDA
When the Hereditary Neuropathy Foundation set up a patient focused drug development meeting with the FDA, it knew that patients with… Continue Reading
Rare Leader: Sue Kahn, Executive Director, National Tay-Sachs & Allied Diseases Association
The Basics Name: Sue Kahn Title: Executive director Organization: NTSAD – National Tay-Sachs & Allied Diseases Association Disease focus:… Continue Reading
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