Editor’s Choice: Twists and Turns on the Rare Disease Road

You know the best thing about a 3-day weekend? A 4-day work-week!

We hope you had a fun and safe Labor Day Weekend here in the states. How do you spend your holiday weekends and maintain your strict rare regimen? Let us know here.

This week we have a strange twist in those rare patients transitioning to adulthood, info on a CF hearing loss warning system, a potential new use for a rare disease drug and a PW contribution on adult-living with rare disease.

We hope you enjoy this week’s Editor’s Choice.


A Strange Twist for Those Living Beyond Childhood with CF, Other Rare Diseases

Who do you go to when you “outgrow” your rare disease doctor?

Read more here.


CF Patients May Have Early Warning System For Hearing Loss

A new test is on the horizon for CF patients and families.

Check it out here.


This Rare Disease Drug Can Reduce Heart Disease Risk

An interesting study found a new use for this rare disease drug.

Get the highlights here.


Why Do Children Suffer with Rare Disease, but Adults Just Live with It?

PW Contributor Rebekah talks about living with cystinosis as an adult.

Read more here.


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

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