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 @RARE_X_]

🌟 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_]

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_]

Congratulations to the winners of the first Xcelerate RARE Open Science Data Challenge! To check out the winners: https://t.co/lRXHjFD9w8
@Roche @Sagebio @UW @umichmedicine @StJude @3billionrare

#OSDC #XcelerateRARE #RAREAdvocacySummit #CareAboutRARE #PatientData

[RARE-X @RARE_X_]

Good morning! ☀️ It is Day 2 of the RARE Advocacy Summit! To tune into sessions: https://t.co/10jXtLjCOR

#WeekinRARE #RAREAdvocacySummit #GGSummit23 #GlobalGenes #CareAboutRARE #RAREDisease #SanDiego

[RARE-X @RARE_X_]

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: https://t.co/CvZFcq6jWN

#WeekinRARE #RAREAdvocacySummit #GGSummit23 #RDDC #RAREX #OwnIt #GlobalGenes

[RARE-X @RARE_X_]

During a webinar presented with IN-PART, Karmen Trzupek, our Sr. Dir., Scientific Programs, shared how the RARE - X platform can combine innovation priorities to propel academia, industry R&D, & biotechs to collab. Catch the recording: https://t.co/jGCukz88gR

#RAREX #OWNIT

[RARE-X @RARE_X_]

We are so honored to have our Associate Marketing Manager representing at the Koolen-de Vries Summit! #Kdvs #Koolendevries #CareaboutRARE #RAREDisease

[RARE-X @RARE_X_]

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: https://t.co/2FRJd4irif

#RAREAdvocacySummit #CareAboutRare #PatientAdvocacy #NetworkingOpportunities

[RARE-X @RARE_X_]

Join us for a webinar on Tue, June 27th @ 4pm GMT, hosted by @IN_PART as part of their #RareDiseases Global Challenges campaign! Discover our data-sharing platform, approaches to partnering & collab opportunities. Secure your spot: https://t.co/RFl8wGsEWM
#genetherapy

[Global Genes @GlobalGenes]

Over the last week our staff attended the HDSA conference, where they launched the Huntington’s Disease Data Collection Initiative powered by @RARE_X_ and attended BIO 2023 where we we heard about the breakthrough work biotech is performing for society and rare disease!

[RARE-X @RARE_X_]

Register to attend Week In RARE, Sept. 18-21! This 4 day event will feature the RARE Health Equity Forum (formerly Health Equity Summit), the RARE Advocacy Summit (formerly RARE Patient Advocacy Summit), and the RARE Champions of Hope awards. Register: https://t.co/Q8Ex9TTqGJ

[RARE-X @RARE_X_]

Registration is now open for researchers & data scientists to compete in the #XcelerateRARE Open Science Data Challenge! Work together addressing 3 Challenge Topics!
Register: https://t.co/YN1prPd4Fp
For info: https://t.co/AHfMGm97PO
@Roche @RocheCanada

#XcelerateRARE

[RARE-X @RARE_X_]

Today we're happy to announce our collaboration with @ConsortiumSleep on the Sleep Data Collection Initiative to accelerate the development of treatments for central disorders of hypersomnolence (CDoH) and related conditions. Read here:
https://t.co/nfdHhCSQZR
#CDoH #RareDisease

[RARE-X @RARE_X_]

We are excited to collab with @HDSA on their data collection program for Huntington's Disease. Their initiative (HD-DCI) will enable people with HD to better share their data to accelerate developing treatments.
To read: https://t.co/TppWqG9Vy9

#HDSA #HuntingtonsDisease

[RARE-X @RARE_X_]

We are so excited to have our CEO, Charlene Son Rigby representing at the first #STXBP1 European Summit and Research Roundtable!
#CareAboutRare #RareDiseaseResearch

[Charlene Son Rigby @charleneson]

Psyched to be in Milan for the first #STXBP1 European Summit and Research Roundtable. Let’s @curestxbp1 please.
Thank you @GannaBalagura for your amazing leadership to make this happen

[Effie Parks @OnceUponAGene]

Hug your babies today.
Go outside and take them for a walk.
Snuggle on the couch.
Send someone love.
Another rare disease child was lost to a terrible disease and hearts are shattered. 💔💔💔💔🩷🩷🩷🩷

[Global Genes @GlobalGenes]

During 2022, the 28 incredible organizations that received this grant went on to not only improve their outreach strategies, but also addressed challenges within their communities. To read more about these organizations and their noteworthy projects:
https://t.co/ZUwxeMkAv1

[Global Genes @GlobalGenes]

Our Res. & Data Governance Lead, Vanessa Vogel-Farley is at St. Jude’s Patient Advocacy & Community Engagement in the Advancement of Pediatric Translational Neuroscience workshop speaking on a panel about opportunities and challenges to advance research!
#RAREX #OwnIt

[Global Genes @GlobalGenes]

“Gene therapy will be the only thing that may save people’s lives. If we can do this and spread it around the globe, that will be big for the rare disease community”
-Peter Marks, M.D., Ph.D.
@US_FDA
#RDDS #DrugDevelopment

[Global Genes @GlobalGenes]

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: https://t.co/A7GByjHPYY
@RARE_X_ @cacna1a @cure_mito @OdyliaTx
#RDDS