Welcome to the #Fediverse Michele @mmanion & @PCDFoundation- we are very glad you are here! #RareDisease #PrimaryCiliaryDyskinesia #ciliopathies #PatientAdvocacyGroups #PatientVoice

Welcome to the #Fediverse Michele @mmanion & @PCDFoundation- we are very glad you are here! #RareDisease #PrimaryCiliaryDyskinesia #ciliopathies #PatientAdvocacyGroups #PatientVoice

@thelizarmy patient-investigator extraordinaire publishes her #POV on awake #craniotomy for her #BrainTumor, provider-#patient #communication, #SharedDecisionMaking in #NEJM — check it out!

NEJM (paywall): https://www.nejm.org/doi/full/10.1056/NEJMp2210418

Birdsite: https://twitter.com/thelizarmy/status/1599873193439039488

#PatientEngagement #PatientEmpowerment #MedEd #MedMastodon #mediverse #PatientVoice

Hello! Todays our first day in the new world of @Mastodon

Some stuff we love, are interested in and do 😊

#RareDisease
#RareFest22
%RareSummit
#UniqueFeetCam
#RareBearLife
#PatientVoice
#Cambridge

Give us a follow. Come to our #science #twcuology #community #arts festival RAREfest22 next weekend!

Bit.ly/RAREfest22 It’s free and gonna be awesome!

RT @GoldenMoe@twitter.com

#ACR22 Big ups to #PatienfBoard! (And those who couldn’t attend @TheMoreKodhek@twitter.com @LauraAnnTom@twitter.com @WallaceUofE@twitter.com) -@SynceNerd_Carli@twitter.com dipped🤓. You’re ALL the backbone for every & anything in #healthcare! #COVID19 #rheumatology #patientengagment #patientvoice #CovidVaccine
@emilysirotich@twitter.com https://t.co/zRjkHmxz1N

🐦🔗: https://twitter.com/GoldenMoe/status/1592538763632455680

RT @GoldenMoe@twitter.com

😀 👏🏾While some of @rheum_covid@twitter.com were unable to travel to @ACRheum@twitter.com #ACR22,I’m feeling quite grateful to finally connect IRL. The #patientengagement of #COVID19 research,comms,etc was ideation to scale..truly like no other. Thank you all! #RheumTwitter #rheumatology #patientvoice https://t.co/jCNvZ877cT

🐦🔗: https://twitter.com/GoldenMoe/status/1592538753960218638

With Twitter's uncertainty & my awesome academic colleagues & #EDI champions #MastadonMigration, I am acutely aware that our #RareDisease community has not made the jump. If we are here and they are there, how do we stay connected?

I see @UsherSyndromeIreland has joined the party on here now: welcome! How do we get more #PatientAdvocacyGroups to do the same and avoid fragementation.

Ideas? #PatientVoice #ciliopathies

I am proud to lead the @RESCEUproject with @ProfHarishNair. The trust built between public & private partners and the inclusion of the #patientvoice are unique. This #RSVAwarenessWeek we share a video of key project outcomes highlighted during our closing event @IHIEurope 📽⬇
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RT @RESCEUproject
📢It's #RSV Awareness Week!

🔎@RESCEUproject has generated crucial new evidence on Respiratory Syncytial Virus.

🎥Watch this video to l…
https://twitter.com/RESCEUproject/status/1589573930788225025

I am proud to lead the @RESCEUproject with @ProfHarishNair. The trust built between public & private partners and the inclusion of the #patientvoice are unique. This #RSVAwarenessWeek we share a video of key project outcomes highlighted during our closing event @IHIEurope 📽⬇
---
RT @RESCEUproject
📢It's #RSV Awareness Week!

🔎@RESCEUproject has generated crucial new evidence on Respiratory Syncytial Virus.

🎥Watch this video to l…
https://twitter.com/RESCEUproject/status/1589573930788225025