Gleder meg til denne gangen å stille spørsmålene under Arendalsuka! Nå lader jeg opp til samtale om fremtidig tilbud til personer med sjeldne diagnoser i Hjerneteltet på onsdag. Kommer du?
📣 Bli med på vår engasjerende scenesamtale om sjeldne diagnoser under #Arendalsuka2023 den 15. august! Dykk ned i fremtidens utfordringer og muligheter i sjeldenfeltet.
🌟Fysisk: https://t.co/wAzz6L0Zat
🌟Strømmelenke: https://t.co/VD8QkcoukY
#SjeldneDiagnoser#NKSD
"Stor nyhet! 🎉 Nasjonal kompetansetjeneste for sjeldne diagnoser er del av #JARDINprosjektet, mottar 5M kr fra EU for samarbeid om sjeldne diagnoser. Dette styrker norske og europeiske nettverk, og gir pasienter tilgang til likeverdig behandling🤝 https://t.co/uiVvOdgqcu
Er det «ikke så farlig» når noen av oss havner i ulykker? Gry stiller, med rette, spørsmålstegn ved rettssikkerheten til funksjonshemmede. #dax18#tv2nyheter#dagsavisen
https://t.co/iIanEyidwm
Workshop "Patient priorities in ERN BOND beyond Quality of Life" organised by ERN BOND ePAGs.
📍 Istituto Ortopedico Rizzoli, Via Pupilli 1, Bologna
⏰ 6th May 2023, 9am-4pm (CEST)
Complete by April 30th 2023 the registration form https://t.co/gXlWcZPQi1
EURORDIS Board Member, @RSkarberg, deftly evidenced the existence of the unmet medical needs experienced by many members of the rare disease community.
She called for a robust regulative framework to act as a protective hand, bringing treatments to people across Europe.
Tune in to the new episode of #EurordisRareOnAir!
Listen to @rskarberg, @castrorakel and Adéla Odrihocka explore the importance of breaking down barriers for people living with a rare disease and disability to live freely.
🔗https://t.co/W9AejndgPe
Many with #RareDiseases are still waiting for equal access to precise diagnosis, to the newest innovations, to involvement & care on their own terms.
Perfectly put @RSkarberg!🌟
📢Let's raise our voices together for #Equity in access to health care!
https://t.co/AhNB3epebg
Excited to speak in the opening of #ECRD2020 today about my thoughts on future scenarios for the field of rare disease #Rare2030 We are all connected and in this together! #EURORDIS
'What unites people living with a rare disease is the lack of kowledge, no only on the medical but also the social aspects - when you know more, you do better'.@RSkarberg 👏👏👏 at @eurordis#RareDiseaseDay Policy Event
.@RSkarberg @OIFE_OI “A lack of knowledge in medical care but also social care causes so many problems. We need to address this. This is why #RareDiseaseDay is important. I might not need an entirely different system of care but I need my needs to be recognised w/in that system”
The main ambition of the #ERNBOND is to implement measures that facilitate patient-centred and participative care provision to people living with #RareBoneDiseases 🤲
Here's why we're so glad to make a similar announcement: https://t.co/zRHSGOtxdu
@eurreca
@RareEndoERN