We are a nonprofit research organization accelerating therapeutic solutions for patients and fostering research collaboration in the rare disease community.
San Diego, CA
Joined March 2014
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RARE Science retweeted
Thanks to our friends @RARE_Science for donating #RAREBears to 13 children who received free clinical whole genome sequencing from RGI!
Help our #boyscout earn is #Eagle! Partnering 2 build a global outreach program 4 #EDS, sending 1000 #RAREBears home rarescience.org/donate/
Our goal is to send 1000 #RAREBears home this June! #Donate today to help w/ shipping &bring smiles around the world gofundme.com/SendARareBear
Take a look into what life is like for children living with #EhlersDanlosSyndrome #awareness #dazzletogether teapawt.net/TheEDSociety/status/86…
When I Asked 25 Kids With Ehlers-Danlos Syndrome What Their Lives Are Like
ow.ly/sMVl30bUVm1
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RARE Science retweeted
But you don't look sick!
Check out ehlers-danlos.com for more information.
#DazzleTogether
RARE Science retweeted
Ehlers-Danlos patients often have GI comorbidities
Learn more at https://teapawt.net/t.co/VLNRVDikrv
#DazzleTogether
This is what #RAREScience is all about! Finding connections and, from there, cures. #ehlersdanlosawareness #raredisease #nonprofit teapawt.net/TheEDSociety/status/86…
Diagnosis delays are a huge problem for patients with EDS.
Check out ehlers-danlos.com for more information.
#DazzleTogether
RARE Science retweeted
Why do hypermobility spectrum disorders affect people differently?
Check out ehlers-danlos.com for more information.
#DazzleTogether
RARE Science retweeted
If many forms of EDS are collagen disorders, can we take collagen supplements?
Go to ehlers-danlos.com for more info.
#DazzleTogether
RARE Science retweeted
What is Vascular Ehlers-Danlos Syndrome?
Check out ehlers-danlos.com for more information.
#DazzleTogether
May is #EhlersDanlosSyndrome Awareness Month! Check out some cool facts and #dazzletogether. #awareness #ehlersdanlosawareness #nonprofit teapawt.net/TheEDSociety/status/85…
What are the most common forms of EDS? Check out ehlers-danlos.com for more information! #DazzleTogether
RARE Science retweeted
What are the Hypermobile Spectrum Disorders?
Check out ehlers-danlos.com for more information!
#DazzleTogether
RARE Science retweeted
What are the Ehlers-Danlos syndromes?
Check out ehlers-danlos.com for more information!
#DazzleTogether
ICYMI: We had our bear match for @IFF_FOXG1 last Sunday and bears are on their way home! #awareness #RAREBearArmy #donate #FOXG1syndrome teapawt.net/Jimmay82/status/858324…
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RARE Science retweeted
If we could lower barrier to access to data we could make a real difference to #rare #diseases - Christina Water at #BioDataWest
We're so happy to see the #RAREBears have made themselves at home with #warriors Dylon, Ethan… instagram.com/p/BTX0eICFDDO/
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RARE Science retweeted
#biodatawest @RARE_Science can help gather info by combining similar diseases - they even have an app that collects info from patients
