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!



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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?
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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.
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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.
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A New Era; Social Media Support for Human Genetics

How are Facebook and medical research affecting each other?
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Do you have a rare disease experience of your own? Share with us here.

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