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Global Genes

A total of 317 posts are filed under Global Genes
Curating Patient Data to Accelerate Rare Disease Drug Development
When Onno Faber began experiencing hearing loss in his left ear four years ago, doctors suspected an infection and prescribed steroids. His… Continue Reading
Monkeying Around with a Rare Neurodegenerative Disease
At the Oregon National Primate Research Center there’s a colony of macaques that have been around since the 1960s when the Japanese… Continue Reading
Forging a Research Agenda for a Rare Disease
When Katheryn Elibri Frame’s daughter was diagnosed with CDKL5 disorder, a rare neurological condition that causes treatment-resistant… Continue Reading
A Thought-Provoking Documentary Offers Reminders to Research Participants
When Robert Shafran arrives as a freshman at Sullivan County Community College in New York’s Catskill Mountains, one person after another… Continue Reading
Making the Journey from All-American Athlete to Rare Disease Advocate
As a college student at Syracuse University, Rob Long was an All-American punter bound for the NFL. His plans took an unexpected turn,… Continue Reading
Going Boldly
I recently watched Star Trek IV: The Voyage Home, the movie where the crew of the USS Enterprise travels back in time from the 23rd century… Continue Reading
How Destiny Lamonte Learned to Advocate for Herself and Others
At the age of 4, Destiny Lamonte was diagnosed with vascular Ehlers-Danlos syndrome, a rare connective tissue disorder and considered the… Continue Reading

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