Editor’s Choice: Rare Disease and Rising Up

Happy Thursday!

This week, we’re highlighting an story about a woman with Bechet disease who advocates for herself and others. Next, we have an article discussing the difficulty of caring for someone with a rare disease while managing your own health, followed by a piece on microbiome research. Last but not least, we’re sharing an article on the work advocacy groups in the US are doing to promote rare disease-friendly legislation.
Sit back and enjoy this week’s editor’s choice!

 

“I have been in the trenches. I know what it’s like to rise back up”: Beth’s Behcet’s Story
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After an arduous journey with a rare disease, Beth is helping patients going through similar challenges.

 

The Challenges of Being a Rare Disease Patient AND a Caregiver

 

 

 

 

We all want to be there for the people we love– but how do we simultaneously manage our own health needs?

 

Using The Microbiome to Treat Disease: Great Potential, But Patients Must be Protected

 

 

 

 

Microbiome research is a hot topic right now– but how are patients being protected throughout it?

 

Rare Disease Groups Come Together to Advocate for Newborn Screening Legislation

 

 

 

Newborn screening saves lives, and these groups are working to make it more accessible.


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

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