Editor’s Choice: Rare Disease Art During COVID-19

Happy Friday!

We’re about halfway through Stevens-Johnson Syndrome Awareness Month. It’s a type of severe skin reaction that often involves admission to a burn unit for treatment. Looking for ways to help out? This is a good place to start. We also have the story of an artist who is using her creativity to lift people’s spirits during the COVID-19 pandemic. Then there is information about a new program that brought down malaria cases by 85% in Mozambique. Finally, the latest episode of our podcast, “Wait, How Do You Spell That?” is out! In it, we discuss the long road to diagnosis and working through treatment denials with Whitney Carter,  a disease advocate. Check it out below.  We hope you enjoy your weekend!


Artist with Acromegaly Shares Her Story and Art to Spread Joy During COVID-19

Kara LeFrance is diagnosed with acromegaly, a rare disease, and she’s been battling it since she was 20 years old.


Mozambican Malaria Program Reduces Cases by 85%

Resulting from microscopic parasites transmitted from mosquito bites, malaria is a severe illness that can be fatal without treatment.


New Podcast Episode: Wait, How Do You Spell That?

A disease advocate gets personal about diagnosis and treatment denials.


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

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