🌟 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

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

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Congratulations to the winners of the first Xcelerate RARE Open Science Data Challenge! To check out the winners: @Roche @Sagebio @UW @umichmedicine @StJude @3billionrare . #OSDC #XcelerateRARE #RAREAdvocacySummit #CareAboutRARE #PatientData

Good morning! ☀️ It is Day 2 of the RARE Advocacy Summit! To tune into sessions: #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: #WeekinRARE #RAREAdvocacySummit #GGSummit23 #RDDC #RAREX #OwnIt #GlobalGenes

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: #RAREX #OWNIT

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: #RAREAdvocacySummit #CareAboutRare #PatientAdvocacy #NetworkingOpportunities

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: #genetherapy

RT @GlobalGenes: Over the last week our staff attended the HDSA conference, where they launched the Huntington’s Disease Data Collection In….

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:

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

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:.#CDoH #RareDisease.

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: #HDSA #HuntingtonsDisease.

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

RT @OnceUponAGene: Hug your babies today. Go outside and take them for a walk. Snuggle on the couch. Send someone love. Another rare di….

RT @GlobalGenes: During 2022, the 28 incredible organizations that received this grant went on to not only improve their outreach strategie….

RT @GlobalGenes: Our Res. & Data Governance Lead, Vanessa Vogel-Farley is at St. Jude’s Patient Advocacy & Community Engagement in the Adva….

RT @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….

RT @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 togeth….