Editor’s Choice: Dystonia Stories and Studies

Happy Pre-Thanksgiving Week Friends!

It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and what truly matters — principles often easily lost in other holidays.

This week we have a personal story on dystonia and some info on an upcoming clinical trial for cervical dystonia. We also have a post on Fabry Disease support and an announcement of an upcoming PKU Awareness event!

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

 

Fabry Disease: These Pharma Giants Truly Have Heart and Billions to Share

Do you have a rare disease? If so, you know how difficult it is to get a drug to market. The cost and time often make it difficult for pharma companies to invest.

That’s why these biotech companies will surprise you in this post.



When Nolan Took Control of Dystonia

Patient Worthy Contributor Nolan has shared with us his journey through the world of dystonia.

In this installation of our video series, he talks about how he accepted his disease and ran with it.



PKU Awareness Day is December 3rd – Here’s What You Can Take Action Tomorrow

December 3rd is PKU Awareness Day and one of our contributors wants your help in passing the 21st Century Cures Act!

Check out details here.



Proof of Concept Study for Cervical Dystonia

It is always encouraging to hear about studies or clinical trials for your rare disease.

Check out this post for the latest on a study for cervical dystonia.


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.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu