Editor’s Choice: Rare Disease Day, Art and Shocking Videos

Happy Day-After-St.Patty’s-Day!

As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist who made a huge impression at Capitol Hill’s Rare Artist Reception.

We also have a shocking video review on the affects of Narcolepsy.

So sit back and enjoy this week’s Editor’s Choice!

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Rare Artist at Rare Disease Week: Olivia and Her Drawing Triumphant Tiger

This young girl with primary ciliary dyskinesia (PCD) showed her art at Rare Disease Week on Capitol Hill a few weeks ago.

She spoke to a crowd about her art means to her, in relation to having a rare disease, and gave us the inside scoop! Check it out here.

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Rare Disease Day Highlights

PW Team Member Becky spent Rare Disease Day (which also fell on the rare Leap Day) on Capitol Hill!

Check out her highlights from the day at NIH.

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Are You Treating Children with Rare Disease the Wrong Way?

Having a child with chronic illness is complicated enough! Medicines, doctor’s appointments, special accommodations, the list goes on.

But what about when they interact with other people? Check out PW Writer Farrah Fontaine’s opinion on how we should address children with rare diseases.

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How Did a Narcolepsy Video Absolutely Shock a Cynic?

This brave woman unexpectedly had a narcolepsy episode while filming a dance.

Instead of trashing the video, she posted it on YouTube for Narcolepsy awareness. Check out our highlights and access to the video here.

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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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