Usher Syndrome Ireland · @UsherSyndromeIreland
41 followers · 33 posts · Server mastodon.ieHello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome
#RareDisease #rarediseaseireland #rarediseasecommunity #UsherSyndrome
MediPaCe · @MediPaCe
13 followers · 29 posts · Server mastodon.world
Leveraging existing #PatientGroups and networks is key to finding #RareDisease patients to engage in medicines R&D says Inês Alves from ANDO Portugal.
➡️ Read more about how to overcome challenges to #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/
#patientgroups #RareDisease #PatientEngagement #rarediseasecommunity
MediPaCe · @MediPaCe
13 followers · 29 posts · Server mastodon.world
"What we need is a #PublicPrivatePartnership approach, because the current drug development model does not work in the case of #UltraRareDiseases"
➡️See Nick Sireau's full interview:
https://www.youtube.com/watch?v=RKzwBmUYKF4
➡️Read the full article about overcoming challenges in #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/
#publicprivatepartnership #ultrararediseases #PatientEngagement #rarediseasecommunity #rarediseaseday