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.............

RARE-X.org Joined May 2020

197 Following 1K Followers 517 Posts

Latest posts 5

RARE-X @RARE_X_ Oct 5, 2023

🌟 Exciting News! 🌟
Let's extend a warm welcome to 8 incredible patient advocacy groups who have joined the RARE-X platform this month! 🤝 We are looking forward to collaborating & helping you start your data collection journey. Together, we are making a difference💪✨ #OwnIt

RARE-X @RARE_X_ Sep 21, 2023

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 @WSSFoundation

#RAREX #UsersForum #PatientAdvocacyGroup #OwnIt #PatientData #PatientAdvocacy

RARE-X @RARE_X_ Sep 20, 2023

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 @Sagebio @UW @umichmedicine @StJude @3billionrare

#OSDC #XcelerateRARE #RAREAdvocacySummit #CareAboutRARE #PatientData

RARE-X @RARE_X_ Sep 20, 2023

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

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RARE-X @RARE_X_ Sep 13, 2023

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