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!



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“I have been in the trenches. I know what it’s like to rise back up”: Beth’s Behcet’s Story




After an arduous journey with a rare disease, Beth is helping patients going through similar challenges. [/one_half_last] [one_half]


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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?
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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?
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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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