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 Rare Disease Day 2019

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medmisfit
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PostSubject: Rare Disease Day 2019   Rare Disease Day 2019 I_icon_minitimeMon Feb 11, 2019 10:33 pm

Ok y'all, Rare Disease Day is fast approaching (Feb 28th). They're doing the "Show Your Rare" campaign again this year. If you saw posts from last year, it was a really fun, fairly inexpensive way to get involved. NORD added #ShowYourStripes to the US campaign, so I thought it was time to get my zebra back up.

You can get more info on the Show Your Stripes campaign here https://rarediseases.org/rare-disease-day for the US or Show Your Rare here https://www.rarediseaseday.org/article/show-your-rare for World Rare Disease Day. These links will also give you an opportunity to look for other ideas and awareness activities in your area.

Global Genes also has information at https://globalgenes.org/world-rare-disease-day/. #CareAboutRare is their slogan this year and they offer signs that you can print for social media pics. Wear that You Care is probably the easiest form of awareness because you just wear denim jeans or ribbons on Rare Disease Day. They use denim because 80% of rare diseases are in our genes. They will provide you with ribbons for free and have all sorts of stickers, pins, etc for purchase. They also have a virtual race to raise money, if you're able to swim, walk, run, or wheel. It's a great organization, especially for kids with rare diseases, so I encourage you to check them out!

This year's theme is "Bridging Health and Social Care". They're focusing on bridging the gaps between medical, social, and supportive services. It's what we do here and so, so important for the rare community because there's limited access to appropriate care, all sorts of misconceptions and inaccurate information, isolation, financial burdens, etc. This is our chance to get involved and make our voices heard, so I encourage you all to find some way to participate or ask a friend or family member to do something on your behalf.. together we're strong!
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