Top Tweets for #RareSummit
CamRARE’s #RAREsummit is back for 2026 and we’re excited to be media partners!
If you work across rare science, healthcare, research, innovation, policy, funding, advocacy or live with a rare condition, this is the place to connect, collaborate and drive progress
Date 7 Oct 2026
A massive thank you to our #RAREsummit25 media partners @PatientWorthy Use MY data, @HinxtonHall & Cambridge Network for your support in spreading the word about #RAREsummit on 6 Nov 25!
For what's on, and to get your tickets to join us, visit our website: https://t.co/gS99ctOnof
“You don’t have to advocate alone, bring your community with you.” - James Griffin
T2: Empowering
Advocacy: Federal, State & Patient Insights. @GlobalGenes
#weekinrare #rarehealthyequity #raresummit #ggsummit
Day 1 of the Global Genes: Week in Rare Conference in KC. #WeekinRare #RareSummit @GlobalGenes #PatientAdvocacyGroup #CureLCC
We need to do it [find treatments] for everybody in need . . . We are at a crossroads. . . Why do we have co-pays for rare disease medicines . . .
- John Crowley @GlobalGenes #rarehealthequity #raresummit
![Cleverlychangin's tweet photo. We need to do it [find treatments] for everybody in need . . . We are at a crossroads. . . Why do we have co-pays for rare disease medicines . . .
- John Crowley @GlobalGenes #rarehealthequity #raresummit https://t.co/xpaZSR1v2f](https://pbs.twimg.com/media/GYaSoeYaMAIGIOL.jpg)
![Cleverlychangin's tweet photo. We need to do it [find treatments] for everybody in need . . . We are at a crossroads. . . Why do we have co-pays for rare disease medicines . . .
- John Crowley @GlobalGenes #rarehealthequity #raresummit https://t.co/xpaZSR1v2f](https://pbs.twimg.com/media/GYaSoeXaMAYnECa.jpg)
[People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit
![Cleverlychangin's tweet photo. [People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit https://t.co/zsNn3HHQJf](https://pbs.twimg.com/media/GYaRJSRaMAgbmPo.jpg)
![Cleverlychangin's tweet photo. [People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit https://t.co/zsNn3HHQJf](https://pbs.twimg.com/media/GYaRJSLaMAE_TKV.jpg)
Our Freshman Orientation for first-time attendees has wrapped up at #WeekInRARE! Like + share this photo if you see yourself pictured! 📷 Welcome, everyone! We're happy you're here! #RARESummit #RAREHealthEquity #GGSummit #GGSummit2024 #GlobalGenes #CareAboutRare #BeCounted
We are two days out before the start of Week in RARE! This event is made possible by the generous support of our sponsors - thank you! ✨
#WeekInRARE #RARESummit #RAREHealthEquity #GGSummit #GGSummit2024 #GlobalGenes #CareAboutRare #BeCounted #RAREX #RareDisease
Lindsey Taveren, CNF Interim ED will be at the @globalgenes Week in RARE Conference🌍Attending in person or virtually, time to make an impact! 💡🔗 https://t.co/9HWtBh1A3K
Tag a friend who should be there! 👥
#WeekinRARE #RARESummit #RAREHealthEquity #GGSummit #GlobalGenes
Our founder is looking forward to attending @GlobalGenes' Week in RARE this September! @Kegottsleben would love to see you all there! Register here: https://t.co/iWDIZr1ynx
#WeekInRARE #RARESummit #RAREHealthEquity #GGSummit #GlobalGenes
🦓 Join us at @GlobalGenes Week in RARE Sept. 25-28 for insightful sessions & valuable connections with #raredisease advocates! We can't wait to welcome you to KC!👋🏿
Register: https://t.co/jMVZtzHwu6
#WeekinRARE #RARESummit #GlobalGenes #GGSummit #RAREHealthEquity #KansasCity
Need a reason to attend Week In RARE? WE'VE GOT 10! 📝 September will be here before you know it, so take the plunge and secure your registration today! 🌟
🌐 https://t.co/3uni2b53Fk
#WeekInRARE #RARESummit #RAREHealthEquity #GlobalGenes #CareAboutRare #RAREX #RareDisease
Week In RARE Early Bird Pricing for registration ends tomorrow! ⏰ Secure your spot & join us Sept. 25-28 at the fabulous Loews Kansas City Hotel for 4 days of inspiring sessions. See you there! #WeekinRARE #RARESummit #RAREHealthEquity 🦓
REGISTER HERE: https://t.co/FXunF8jH46
✨ Join us in Kansas City, MO, from September 25-28, 2024, at the fabulous Loews Kansas City Hotel for Week in RARE. 3 events packed into 3 days! Don't miss out - secure your spot now.
Learn more: https://t.co/JfBYoD5zGH
#WeekinRARE #RARESummit #RAREHealthEquity
🤝 Do you have #trust and #confidence in #healthcare professionals in light of the UK #RareDiseases Framework?
We explored this topic and presented our findings at the recent @camraredisease #RAREsummit. Take a look at our project poster now: https://t.co/5vPBte0wnL
Its been an honour to speak at #RareSummit today thanks to @camraredisease for the invitation. Increasing #PopulationDiversity and aligning our goals with #patientadvocacygroups is vital! 🧬 #RareDiseases #RoryBelleFoundation
The #RareSummit is quickly coming to a close!
Come say hi and pick up our swag before the day ends 🔥
@Kate_Sci @camraredisease @East_Genomics @antriana81 think that was our #Ataxia spot for #RareSummit??
#RareSummit23
Train cancelled on the way to #RareSummit @wellcomegenome not ideal, but bigger things listening to Billy Connolly's interview on @BBCr4today.
Ebullient as ever, but touches movingly on the changes Parkison's has brought to his mind and body.
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