“We may be RARE, 
but we’ve got ROAR.”
-Julie Flygare

Yes, I’m (awkwardly) quoting myself today. Happy Rare Disease Day! The rare disease community is a huge source of inspiration to me. Many struggles I thought were “only narcolepsy”, are quite universal for rare disease patients. 

• We have difficulty finding proper diagnosis.
• We have limited treatment options, which are often very expensive.
• We often feel isolated and alone, yet 1 in every 10 Americans has a rare disease. 

Rare diseases are the underdogs, so how is it that our community is at the FOREFRONT of patient engagement and health policy efforts?

It’s because we’ve got ROAR. We’ve been pushed down and overlooked… which has sparked a great passion to stand back up again,  united and stronger than ever, to tell the world WE ARE RARE & WE MATTER.  

Thank you to Global Genes for making rare disease so hip. Thank you to my friend, the amazing #RarePOV leader Stephanie for supporting my efforts. I wish I was in Washington DC today, spreading awareness with Rare Disease Legislative Advocates. I’m cheering for you from Los Angeles, CA!

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