#patientadvocacygroups — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #patientadvocacygroups, aggregated by home.social.
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Welcome to the #Fediverse Michele @mmanion & @PCDFoundation- we are very glad you are here! #RareDisease #PrimaryCiliaryDyskinesia #ciliopathies #PatientAdvocacyGroups #PatientVoice
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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