RT @Parlimag: 95% of rare diseases across the world still lack treatment options.

We brought together MEPs @kympouropoulos @istvan_ujhelyi & @mgracacarvalho and #Partnering4PNH to discuss how the EU can support research into these rare diseases.

https://www.theparliamentmagazine.eu/news/article/meeting-the-medical-needs-of-the-36-million-europeans-living-with-a-rare-disease

#partnercontent https://t.co/YCDUmdJ9i3

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1650895862468362242

⚫ More investment in R&I and cooperation in and outside of Europe
⚫An increase in the use, sharing, and gathering of data while maintaining privacy
⚫Raising awareness for the need of better health systems

@jelenamalinina @drjameelnazir @psdparleuropeu @EPPGroup @ppdpsd
RT @evoke_incisive: What will it take to address the #UnmetMedicalNeeds of people living with a #RareDisease?

With @EUCOPE we are proud to join the #Partnering4PNH community & MEPs @istvan_ujhel…

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1630969535384649739

RT @evoke_incisive: What will it take to address the #UnmetMedicalNeeds of people living with a #RareDisease?

With @EUCOPE we are proud to join the #Partnering4PNH community & MEPs @istvan_ujhelyi @kympouropoulos @mgracacarvalho to celebrate #RareDiseaseDay2023 & discover their #PNH consensus paper

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1630968775498399750