RSDSA’s Rare Disease Week – 2020
Rare Disease Day is held annually on the last day of February to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long.
Check out our daily virtual activities and join us if you can!
Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like.
Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share.
Wednesday: Join the #SpoonieChat on Twitter at 8p ET to connect with other rare disease warriors. #SpoonieChat was created by Dawn M. Gibson in 2013 for Rheum patients. It has now become a weekly chat for chronic pain patients.
Thursday: Each one, teach one: Share advice for new chronically ill patients and use the hashtag #RSDSArare.
Friday: Connect with another rare disease warrior online or in your community.
Saturday: If you are in the South Haven, MI area, join us for Leap For A Cure at American Legion #49 at 6p.
Please consider making a donation to RSDSA today!
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id like to know how to meet people in my area, san jose ca. i dont know how to zoom or facebook. help would be greatly appreciated. i just got crps 12 2014. id feel better connecting with others who understand me. i havent associated with much of the public since. im still trying to understand this illness. very stressful.
Hello there! Reach out to the Los Altos support group by contacting Steffeny Termain at steffenytremain@icloud.com or at 605.465.9650. We know you are not on Facebook at the moment, but if that changes, there is a Facebook Group for California here: https://www.facebook.com/groups/176484932503177.