Happy Friday Patient Worthians!
This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more cures. We also have a new CF discovery that could help pneumonia treatment in patients.
We also have some news to be angry about. Parents of a daughter with EDS were accused of abuse because doctors didn’t know of her condition. And the medical foods situation in the USA is dangerous for PKU patients.
So sit back, and check out this week’s Editor’s Choice.
How Thinking Like a Tech Start Up Led to Strides Forward in NGLY1 Deficiency Research
Find out how this foundation is working to cure NGLY.
Get inspired here.
Scientists’ Slimey Discovery Could Yield More Effective Pneumonia Treatment for Cystic Fibrosis
CF is a devastating disease, where patients are given a life expectancy at birth.
Check out the latest research to help treat on of their common infections here.
Her Daughter Had EDS, So the Doctor Called the Police
The burden of rare disease weighs heavy on this family during the diagnosis journey.
Read more here.
US Government Refuses to Cover PKU, the Fight Wages On
Try not to get too angry at this steaming pile….
Actually, do get angry. Read more here.
