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RARE Science
@RARE_Science
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
216
Following
1.3K
Followers
463
Posts
RARE_Science
retweeted
Rare Genomics
@RareGenomics
over 9 years ago
Thanks to our friends
@RARE_Science
for donating
#RAREBears
to 13 children who received free clinical whole genome sequencing from RGI!
RARE Science
@RARE_Science
over 9 years ago
Help our
#boyscout
earn is
#Eagle
! Partnering 2 build a global outreach program 4
#EDS
, sending 1000
#RAREBears
home https://t.co/fwqGD7HQ17
RARE Science
@RARE_Science
over 9 years ago
Our goal is to send 1000
#RAREBears
home this June!
#Donate
today to help w/ shipping &bring smiles around the world https://t.co/PjjbW9BpXE
RARE Science
@RARE_Science
over 9 years ago
Take a look into what life is like for children living with
#EhlersDanlosSyndrome
#awareness
#dazzletogether
https://t.co/1Tv1MS3l9e
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
When I Asked 25 Kids With Ehlers-Danlos Syndrome What Their Lives Are Like https://t.co/mGEBu0toTi
Who to follow
Rare Diseases Clinical Research Network
@rarediseasesnet
NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
RARE Foundation
@RareAdvocates
We are a community of relentless advocates who drive public policy to improve the quality of life for all people living with rare diseases.
Beyond the Diagnosis
@BeyondtheDx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
Check out https://t.co/JTavhlManH for more info
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
But you don't look sick! Check out https://t.co/JTavhlManH for more information.
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
Ehlers-Danlos patients often have GI comorbidities Learn more at https://t.co/VLNRVDikrv
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
Check out https://t.co/JTavhlManH for more info
#DazzleTogether
RARE Science
@RARE_Science
over 9 years ago
This is what
#RAREScience
is all about! Finding connections and, from there, cures.
#ehlersdanlosawareness
#raredisease
#nonprofit
https://t.co/Nb3jNIalkQ
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
Diagnosis delays are a huge problem for patients with EDS. Check out https://t.co/JTavhlManH for more information.
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
Why do hypermobility spectrum disorders affect people differently? Check out https://t.co/JTavhlManH for more information.
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
If many forms of EDS are collagen disorders, can we take collagen supplements? Go to https://t.co/JTavhlManH for more info.
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
What is Vascular Ehlers-Danlos Syndrome? Check out https://t.co/JTavhlManH for more information.
#DazzleTogether
RARE Science
@RARE_Science
over 9 years ago
May is
#EhlersDanlosSyndrome
Awareness Month! Check out some cool facts and
#dazzletogether
.
#awareness
#ehlersdanlosawareness
#nonprofit
https://t.co/PZCBcZW7li
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
What are the most common forms of EDS? Check out https://t.co/JTavhlManH for more information!
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
What are the Hypermobile Spectrum Disorders? Check out https://t.co/JTavhlManH for more information!
#DazzleTogether
RARE_Science
retweeted
The Ehlers-Danlos Society
@TheEDSociety
over 9 years ago
What are the Ehlers-Danlos syndromes? Check out https://t.co/JTavhlManH for more information!
#DazzleTogether
RARE Science
@RARE_Science
over 9 years ago
ICYMI: We had our bear match for
@IFF_FOXG1
last Sunday and bears are on their way home!
#awareness
#RAREBearArmy
#donate
#FOXG1syndrome
https://t.co/eKHgLKSdLP
RARE_Science
retweeted
Repositive.io
@repositiveio
over 9 years ago
If we could lower barrier to access to data we could make a real difference to
#rare
#diseases
- Christina Water at
#BioDataWest
RARE Science
@RARE_Science
over 9 years ago
We're so happy to see the
#RAREBears
have made themselves at home with
#warriors
Dylon, Ethan… https://t.co/7O1VtisIag
RARE_Science
retweeted
Manuel Corpas
@manuelcorpas
over 9 years ago
#biodatawest
@RARE_Science
can help gather info by combining similar diseases - they even have an app that collects info from patients
RARE_Science
retweeted
Manuel Corpas
@manuelcorpas
over 9 years ago
#biodatawest
@RARE_Science
- giving hope to patients
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