Editor’s Choice: You’re Going to Be Elated!… Then You’re Going to Get Angry.

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.


Do you have a rare disease experience of your own? Share with us here.
Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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