RARE-X
@RARE_X_
PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
ID:1258843452780851200
http://www.RARE-X.org 08-05-2020 19:37:35
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A great quote from our Users Forum! “Advocate for yourself in the doctor’s office using data. Data is a powerful tool in a doctor’s office” -Christina O’Keefe The Wiedemann-Steiner Syndrome (WSS) Foundation
#RAREX #UsersForum #PatientAdvocacy Group #OwnIt #PatientData #PatientAdvocacy
Congratulations to the winners of the first Xcelerate RARE Open Science Data Challenge! To check out the winners: go.globalgenes.org/as-winners-OSDC
Roche Sage Bionetworks University of Washington Michigan Medicine St. Jude 3billion
#OSDC #XcelerateRARE #RAREAdvocacySummit #CareAboutRARE #PatientData
Good morning! ☀️ It is Day 2 of the RARE Advocacy Summit! To tune into sessions: go.globalgenes.org/ras-x
#WeekinRARE #RAREAdvocacySummit #GGSummit23 #GlobalGenes #CareAboutRARE #RAREDisease #SanDiego
There's still time! Join patient organization leaders across the globe to learn how to make your rare community research ready! Register for the Rare Advocacy Summit: go.globalgenes.org/RX-X-RAS-LS
#WeekinRARE #RAREAdvocacySummit #GGSummit23 #RDDC #RAREX #OwnIt #GlobalGenes
We are so honored to have our Associate Marketing Manager representing at the Koolen-de Vries Summit! #Kdvs #Koolendevries #CareaboutRARE #RAREDisease
This year's RARE Advocacy Summit will provide an unparalleled opportunity to forge meaningful connections and network with others in the rare disease community! Register now: go.globalgenes.org/TW-RAS
#RAREAdvocacySummit #CareAboutRare #PatientAdvocacy #NetworkingOpportunities
Join us for a webinar on Tue, June 27th @ 4pm GMT, hosted by Inpart as part of their #RareDiseases Global Challenges campaign! Discover our data-sharing platform, approaches to partnering & collab opportunities. Secure your spot: go.globalgenes.org/in-part
#genetherapy
Registration is now open for researchers & data scientists to compete in the #XcelerateRARE Open Science Data Challenge! Work together addressing 3 Challenge Topics!
Register: synapse.org/RAREX
For info: go.globalgenes.org/osdc-may
Roche RocheCanada
#XcelerateRARE
Today we're happy to announce our collaboration with Sleep_Consortium on the Sleep Data Collection Initiative to accelerate the development of treatments for central disorders of hypersomnolence (CDoH) and related conditions. Read here:
go.globalgenes.org/as-sc
#CDoH #RareDisease
We are so excited to have our CEO, Charlene Son Rigby representing at the first #STXBP1 European Summit and Research Roundtable!
#CareAboutRare #RareDiseaseResearch
How do you know if your org is “research ready?” Find out in our live stream at 1:15 pm ET. This session will bring together the themes from 2 days of conversations around patient-driven drug development
Watch: go.globalgenes.org/rdds-stream
RARE-X CACNA1A Foundation CureMITO Odylia Therapeutics
#RDDS