Editor’s Choice: So, Coronavirus

Hey, hand-washing friends!

We hope everyone is staying safe and clean right now. Of course, the world is reckoning with Covid-19 right now– and the rare space is no except. Rare patients often feel especially vulnerable, and right now is no exception. We start with some resources to help navigate this uncertain time. Next, we have a story about an advocate for an uncommon type of lung cancer, followed by an article of a warrior mom. Last but not least, we have a note on why protecting those with compromised immune systems is the job of a community.


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How Can Rare Disease Patients Prepare for Coronavirus?


There’s a lot of information, misinformation, and anxiety right now. What can you do to equip yourselv for COVID-19? [one_half]


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How an ALK+ Non-Small Cell Lung Cancer Patient Became an Advocate




This woman never thought she was at risk for lung cancer– and now she’s using her voice to help others. [one_half]


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When Her Son Was Diagnosed with MFDM, She Couldn’t Find A Community. So She Helped Build One



What do you do when there isn’t an advocacy group for your condition> [one_half]


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Get Vaccinated to Protect Yourself and Children with Severe Combined Immunodeficiency




There isn’t a vaccine for COVID-19 yet, but right now we are reminded that protecting those with immunodeficiencies takes the work of a community.

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

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