Familial Hypercholesterolemia
Access Health to Air New Segment on Familial Hypercholesterolemia on 3/29

Don’t miss tomorrow’s segment on Access…

RARECast: A Quest for Tribe: Searching for Others with the Same Ultra-Rare Mutation
When Milo Lorentzen was born, concerns over his condition sent him to a neonatal intensive care unit where he spent the first ten days of… Continue Reading
Dan_Reynolds_Imagine_dragons
A Rockstar, Big Pharma, And an Advocacy Group Unite!
Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and… Continue Reading
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Shop on Amazon.com for Global Genes TODAY!
Great news! We have an upcoming 1-day opportunity to drive additional AmazonSmile donations for Global Genes. The American Customer… Continue Reading
Kawasaki Disease
Two Patients in Same Town Diagnosed with Kawasaki Disease
By Ashley Rodrigue Charles “Dooey” De Silva III was an outgoing six-year-old with a love for fun and a knack for karate. In mid-January,… Continue Reading
Taylor Swift Shake It Off
RDR: Patient, Police and Fire Fighters ‘Shake It Off’ for Rare Disease
Rare Disease Report Hallie Bea Barnard is a young girl suffering from Diamond Blackfan Anemia (DBA) and is currently looking for a bone… Continue Reading
Pope_Francis
Pope Francis to Meet with Huntington’s Disease Patients on May 18, 2017
On May 18th, in the first ever papal audience with Huntington Disease families, Pope Francis will meet with the people affected by this… Continue Reading
Seeking OKU Status for Rare Disease Sufferers
Source Did you know that the last day of February is Rare Disease Day?  Well, this year, the Malaysian Rare Disorders Society (MRDS) took… Continue Reading