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#raredisease — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #raredisease, aggregated by home.social.

  1. Data Support Placebo Group Alternatives in Rare Disease Trials

    Findings from a review of medical #data and #records indicate matched #genetic control groups may not be needed in clinical trials testing treatments for Duchenne muscular dystrophy.

    sciencebusiness.technewslit.co

    #News #Science #Business #ClinicalTrials #DuchenneMuscularDystrophy #Neuroscience #Neurology #ControlGroup #Placebo #Statistics #RareDisease #InheritedDisease #RealWorldData

  2. 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