Editor’s Choice: Rare Patients Helping Other Patients

Happy Wednesday!

We’re officially halfway through May if you can believe it! This week we’re highlighting a piece about an intern using their rare experience to inform their work, followed an article about a bill that could help many patients in need of rehabilitation technology. After that, we have one story that will make you angry, followed by another that will lift your spirits.

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


Intern with Hunter Syndrome Draws Career Inspiration from Patient Experiences


No one understands the rare patient experience like a patient themselves– we’re so glad to see people from the rare community out making change.


New Bill Could Allow Easier Access to Complex Rehabilitation Technology for Rare Disease Patients


It shouldn’t be difficult for anyone access the rehabilitation technology they need, and this bill may make it a little bit easier.


The Chronically Ill and Disabled Deserve Better Than Discrimination and Harassment from the TSA

Beyond the challenges of a rare disease, many patients have to face discrimination as well.


Boy with Scleroderma has Donated Over 7,000 Gifts to Other Children in the Hospital

From socks to scholarships, Wyatt’s foundation is doing great things.

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

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