home.social

#raredisease — Public Fediverse posts

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

  1. I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!

    I’m looking forward to present our work at findme2care.de AND hear about all the other projects.

    Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!

    #humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry

  2. @EU_Commission @EpiCARE_ERN And we are working towards a stronger EU response to #RareDiseases

    The European Reference Networks (#ERNs) are an essential part of the European #raredisease community and a vital part of the 🇪🇺#HealthUnion

    #PurpleDay

    More: health.ec.europa.eu/european-r

    🐦🔗: n.respublicae.eu/EU_Health/sta

  3. Did you know, that collectively, the number of people living with a #RareDisease = to the population of the world’s 3rd largest country? 🤯

    Support #RareDiseaseDay and join the discussion to raise awareness!

    #RareDiseaseDay #PatientEngagement #PatientInvolvement #MediPaCe

  4. Ahead of #RareDiseaseDay 2023 #MediPaCe is showing support by sharing resources and information about rare diseases and #PatientEngagement to help raise awareness and encourage more #collaboration between the healthcare industry and patient community.

    ➡ Follow our campaign through our blog page (link below), or our social media channels and join the movement to raise awareness!

    medipace.com/2023/02/22/rare-d

    #RareDisease #PatientInvolvement #MediPaCe