Editor’s Choice: Celebrating Life, Talking Rare Disease Stigmas

Happy Labor Day Weekend!

It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India) this week, and the risk of disease spreading in areas of intense flooding, if you or a family member want to help, learn more about relief efforts in Forbes here.

In the area of rare disease, we have a story on an indicator of Parkinson’s, an inspiring CF teen, the National Hemophilia Foundation’s event, and the FDA’s crackdown on stem cell clinics.

So sit back and enjoy this week’s Editor’s Choice.

 

Young Researcher Discovers New Indicator for Parkinson’s Disease

In the world of chronic illness, the sooner someone can be diagnosed, the better the patient outcome.

Read more here.

 

Teen Living with Cystic Fibrosis Celebrates Life, Challenges Stigma of Death on YouTube

This young woman with CF is candid and motivating. Her YouTube is a must-see for anyone with rare disease.

Check it out here.

 

National Hemophilia Foundation’s 69th Annual Meeting Wrap-Up!

We had the pleasure of attending the NHF’s 69th Annual Meeting last weekend.

Get the highlights here.

 

A Stem Cell Treatment Nightmare

Stem cell therapy is on the horizon, but there are certain clinics taking advantage of desperate patients.

Read how the FDA is cracking down on those clinics here.


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

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