Top Tweets for #24HoursofRare
@JillianEngages I will be at an event at Queen’s Park in the morning speaking with other advocates and politicians. Then, I am participating in #24HoursofRare to discuss rare disease patient registries. So many amazing things are happening around the world!
In case you missed it you can now watch our Panel launching the #24HoursOfRare on #RareDiseaseDay on the following link
https://t.co/gd0JzAsdXW
Enjoy - we sure did!
#ICYMI

Well I can’t believe the all @rarediseaseday activities are over. great male meeting with @mike_mitt , great discussion on #24hoursofrare thanks @RareRevolutionM for taking part,good meeting with @SondraB_RareQoL who are a #rarefsm and saw the spinnaker tower lit up for #RDD2022
Great discussion today at #24hoursofrare on #RareDisease mens #mentalhealth with
@jefflord @davidrose88 and the Rare Rev Team
Great discussion today at #24hoursofrare on #RareDisease mens #mentalhealth with @jefflord , @davidrose88 and @RareRevolutionM

Great discussion today at #24hoursofrare on #RareDisease mens #mentalhealth with @jefflord , @davidrose88 and @RareRevolutionM

Join us LIVE in 10 minutes for the opening session of #24HoursOfRare on #RareDiseaseday2022 at 12 noon GMT Today where we talk about #TurningTheTide4RARE.
Sign up here : https://t.co/NRtqvZPfu9

Join us as @RareRevolutionM kicks off #24HoursOfRare live from the UK and discusses “Turning the Tide” in #raredisease for #RareDiseaseDay2022!

Join us LIVE for the opening session of #24HoursOfRare on #RareDiseaseday2022 at 12 noon GMT where we talk about #TurningTheTide4RARE.
Sign up here : https://t.co/NRtqvZPfu9


Today at 3pm/ET, #KidsFirstDRC Principal Investigator @adamcresnick participates in a panel discussion for #24hoursofrare to discuss the future landscape of rare disease support and treatments. Registration is free, and the panel will be streamed LIVE!
https://t.co/lOsnoZkyRM

It's your last chance to join in the discussion! Find out what @AllofUsResearch is doing and how you can get involved @MyCityMed #24hoursofrare
It's not too late to register. We'll be going live at 11am! Register now! https://t.co/GRban1c13E

Get your questions ready just 2 hours to go!
Join our panellists today at 4pmGMT/11amEST for "building trust through appropriate, value driven awareness"
#24HoursofRare #CoCreation #Relationships #Language #BestPractice #GetStarted @OPENHealth @ViforPharma @aurorahealthpr

@cherubs very own Dawn Ireland on collaboration between nonprofits in #raredisease at #24hoursofrare! Live now on main stage.

Looky its @ABatemanHouse speaking via #24HoursOfRare @MyCityMed' What are the Ethical Preapproval Considerations for #RareDisease #Patient Groups?'

Fantastic to see over 30 organisations working together for change. Making sure health services are equal for all communities. Kerry discussing these barriers at #24HoursOfRare hosted by @MyCityMed

Fantastic to see Kerry from ASUK and @BarriersDown discussing cultural barriers impacting access in the #24HoursOfRare event hosted by @MyCityMed

Day 2 of #RareAcrossAmerica2021. What did I get myself into? 4 Congressional meetings, a few webinars & a live session w/ @AllofUsResearch @ #24hoursofRare. Pls send #GoodVibes to keep me sane. I'm still trying to recover. It's not too late to join me! https://t.co/GRban1c13E

@Purrfectly_Rare discussing collaboration between patients and physicians in the treatment of pain at #24hoursofrare
Registration is still open!

@kidsfirstDRC's Dr. David Higgins is presenting at #24hoursofrare TODAY at 3pm/ET! Hear his talk to find out how #CBTN data is used w/in the Kids First Portal, #CAVATICA, and #PedcBioPortal to accelerate childhood brain cancer research.
#WeWontStop
#KidsFirstDRC participates in #24hoursofrare this week! At 3pm/ET, Hear from Dr. David Higgins on how data in the Kids First Portal, including @CBTNetwork's #PBTA, is harnessed to advance scientific discovery.
Registration is FREE. Don't miss it!
https://t.co/lOsnoZkyRM

#KidsFirstDRC participates in #24hoursofrare this week! At 3pm/ET, Hear from Dr. David Higgins on how data in the Kids First Portal, including @CBTNetwork's #PBTA, is harnessed to advance scientific discovery.
Registration is FREE. Don't miss it!
https://t.co/lOsnoZkyRM

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