Editor’s Choice: Rare Disease Financial Tolls

Happy Friday!

We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won’t want to miss.

One of our contributors has detailed the financial toll a rare disease takes, and another one talks about the value of support groups when diagnosed with a rare disease.

So sit back and enjoy this week’s Editor’s Choice.
New Drug for Short Bowel Syndrome Gets Orphan Designation

Exciting things happening for the world of short bowel syndrome drug development.

Read more here.

PBS Documentary “The Gene Doctors” Brings Rare Treatments to the Public Eye

Need an interesting watch?

Get the details here.

Rare Disease Families Face Financial Challenges Few Understand

PW Contributor Denise talks about the monetary hit families take when dealing with rare disease.

Read more here.

The Value of a Support Group

PW Contributor Tom details how a support group helps him through dystonia.

Check out his story 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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