Editor’s Choice: Equality, Advocacy, and a Sense of Purpose in the Rare Community

Happy Thursday!

Today, we’re highlighting stories on three patients facing different struggles: a professor, a Jeopardy host, and a man from New Jersey. We also have an article about a problem in the FDA and possible solutions.
Sit back and enjoy this week’s Editor’s Choice!

 

We Need to Ensure That Novel Therapies are Accessible to Minority Populations

 

 

Did you know only 10% of people participating in US clinical trials are from minority populations? How did this happen and how is it affecting patients?

 

Living with Blepharospasm. Validating your Sense of Purpose.

 

 

Whether you have Blepharospasm or not, PW contributor Claire Rider’s piece will leave you feeling inspired.

 

A Cystic Fibrosis Patient Story: Learning How to Advocate for the Care You Want

 

 

Learning to advocate for yourself is essential to getting the treatment you need– here’s how.

 

A New Era; Social Media Support for Human Genetics

How are Facebook and medical research affecting each other?


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

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