Tag: patient stories

A total of 123 posts are filed under patient stories
Winners of Global Gene’s First Annual RARE Patient Story Awards
Today Global Genes announces the winners of its first annual RARE Patient Story Awards. Out of ten fantastic candidates, three were voted on… Continue Reading
Introducing Our First Annual RARE Patient Story Award: VOTING NOW OPEN!
We are excited to announce our First Annual RARE Patient Story Award to honor many of the thoughtful and talented RARE Daily readers, who… Continue Reading
Have You Shared Your Patient Story?
Do you have a rare story of hope and courage to share? If so, we want to hear from you! Tell us about your search for a diagnosis. What… Continue Reading
Why We Post Patient Stories: And Why the World Needs to Hear Yours
Every day on this blog, we post patient stories. That’s one of the amazing things about working here at Global Genes. We hear from… Continue Reading
Ethan's new diet can be complex, to say the least!
Ethan and Family Grapple with Glutaric Acidemia Type 1
Ethan was diagnosed with Glutaric acidemia Type 1 from his Newborn Screening Panel. It is not tested for in all states or countries, but… Continue Reading
I am Ignacio and This is my Story of Life With Idiopathic Intracraneal Hypertention
When I was four, I started to have headaches. The doctor thought that a pill I was taking to help me concentrate might be the problem. He… Continue Reading
Hannah Hutchinson Fought Off Kaposiform Hemangioendothelioma with Kasabach-Merritt Syndrome
A Merseyside couple, who spent their first wedding anniversary watching their baby daughter fight for her life, wants to raise awareness of… Continue Reading