2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)
Joined December 2013
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148 Photos and videos
Pinned Tweet
15 Jan 2019
Get ready to #ShowYourStripes for #RareDiseaseDay & check out our new cover photo! More information coming tomorrow. Stay tuned!🦓
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Rare Disease Day US retweeted
14 Feb 2019
To mark #RareDiseaseDay 2019 EURORDIS, Agrenska &@rarediseasesint are organising the Second High-Level Event of the @ngorarediseases at the @UN HQ in New York on 21 Feb. The event is a chance to discuss next steps towards a UN Resolution on rare diseases. bit.ly/RDDEventUN
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Rare Disease Day US retweeted
How will you Show Your Stripes this #RareDiseaseDay? We'd love to know! Share your ideas using the hashtag, #ShowYourStripes!
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Rare Disease Day US retweeted
10 Feb 2019
The #RaceforRP #Ferrari360 Modena certainly knows how to #ShowYourStripes supporting #RareDiseaseDay on the streets of #NewOrleans, raising awareness for #RelapsingPolychondritis, a rare #AutoimmuneDisease. @eurordis @AARDATweets @RPASF_Official @RareDiseases @rarediseaseday
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Rare Disease Day US retweeted
24 Jan 2019
youtu.be/3FFfmT_B-Xs please check out my full video and leave a comment to help me #RaiseAwareness for #MdDS and help #StopTheRock
#ShowYourStripes #ZebraDiagnosis
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Rare Disease Day US retweeted
25 Jan 2019
Every stripe has a story. I have 3 of the more than 7,000 rare diseases. #showYourStripes #RareDiseaseDay
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16 Jan 2019
We’re going big for our 10th anniversary of Rare Disease Day in the U.S. Who’s with us? It’s time to #ShowYourStripes! Learn more about how you can get involved and help to increase attention on #rarediseases to the world at large this #RareDiseaseDay. ow.ly/Yg4f50kdJZ3
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Rare Disease Day US retweeted
15 Jan 2019
I hear rumor @RareDiseases is gonna be launching a Show Your Stripes Challenge!
Oh, it's ON if they give me the chance... @TernieLaBiscuit You DOWN??
#RAREDISEASEDAY #SHOWYOURSTRIPES #PKUSTRONG #RAREQUEEN
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Rare Disease Day US retweeted
🚨Winter 2019 Fashion Trend🚨 STRIPES! Get ready to #ShowYourStripes for #RareDiseaseDay...
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Rare Disease Day US retweeted
15 Jan 2019
Out now! Download the official poster for #RareDiseaseDay 2019 now available via rarediseaseday.org/downloads. Share it today to show your support for the rare disease community. #ShowYourRare
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Rare Disease Day US retweeted
The zebra is the official symbol of #rarediseases in the U.S. Everyone has their own unique stripes, those characteristics that make each individual distinct. It's time to #ShowYourStripes!
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19 Jun 2018
Today, Pennsylvania advocates came together at the state capitol for a #RareAction Network #RareDiseaseDay Advocacy Event! Patients, caregivers, legislators, and industry representatives were in attendance for a great event to make the voice of #raredisease heard!
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19 Jun 2018
Today, Pennsylvania advocates came together at the state capitol for a #RareAction Network #RareDiseaseDay Advocacy Event! Patients, caregivers, legislators, and industry representatives were in attendance for a great event to make the voice of #raredisease heard!
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Rare Disease Day US retweeted
1 May 2018
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Rare Disease Day US retweeted
6 Apr 2018
"I would really, really love to see this bill passed because it would potentially help people who have rare diseases and are fighting them daily." Please call your KY legislators and ask them to override Gov Bevin's veto of SB7! Call 1-800-372-7181 cjky.it/2q7UEWy
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5 Apr 2018
Attend this upcoming #RareDiseaseDay event! x.com/RareAction/status/9815…
4 Apr 2018
Join us for a 2-day event in TX April 19 & 20! Day 1: TX #RDD 2018. Day 2: Advocacy Workshop. Visit the TX Rare Action site to learn more: rareaction.org/resources-for…
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7 Mar 2018
Together, we can truly accomplish a tremendous amount of awareness for #rarediseases by taking part in #RareDiseaseday each year. Learn more about the 2018 campaign success in the #NORD blog here: bit.ly/2Hf3okC #TogetherWeAreStrong
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Rare Disease Day US retweeted
7 Mar 2018
Due to inclement weather, the New Hampshire #RareDiseaseDay event scheduled for today at the capitol has been cancelled. A new date will be announced soon! @RareDiseases
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Rare diseases are not so rare after all. Our colleagues #CareAboutRARE to support the 350MM affected by a #raredisease worldwide #RareDiseaseDay
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1 Mar 2018
Sending a huge thank you to everyone for all your hard work today in making an impact for the #raredisease community in honor of #RareDiseaseDay! We want to see how you celebrated! Share your photos from today by replying!
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