Editor’s Choice: Painful Lessons in Rare Disease Life and Apps that Make it Easier

Happy Wednesday!

Today, we’re highlighting an article about gene therapy for MPS, followed by a story about a singer with Achalasia. After that, we have an article about app for patients with IBD, followed by reflections from PW contributor, Tom Seaman.

Sit back and enjoy this week’s Editor’s Choice.


Slow but Steady Progress Toward Gene Editing for Hunter Syndrome and Hurler Syndrome

Developing gene therapy is no small task– but these researchers are making progress.


NC Singer Struggles Against Achalasia

Music has incredible healing powers, which one Achalasia patient can vouch for.


The Oshi App: A New Way to Track Your Inflammatory Bowel Disease Symptoms

Keeping track of your symptoms is a huge hassle– but this app might make it easier.


A Painful Lesson for Which I am Grateful

PW Contributor and dystonia Tom Seaman reflects on what he’s learned from living with chronic pain.

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

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