Rebecca T. Skarberg

Disability advocate, social worker, adviser on rare disorders, wheely, fragile yet feisty, OI, cat lover, perfect wife, quilter, chocoholic +++

[Rebecca T. Skarberg @RSkarberg]

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?

[Sjeldne diagnoser @Sjeldne]

📣 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

[Rebecca T. Skarberg @RSkarberg]

Exciting times ahead for ERNs and for national health care services!

[Sjeldne diagnoser @Sjeldne]

"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

[Rebecca T. Skarberg @RSkarberg]

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

[European Reference Network on Rare Bone Diseases @ern_bond]

Here a nice group picture from the ERN BOND plenary hybrid meeting, which took place, today, at Istituto Ortopedico Rizzoli, Bologna.

[European Reference Network on Rare Bone Diseases @ern_bond]

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

[Sjeldne diagnoser @Sjeldne]

Samordningen på Sjeldenfeltet må ivaretas når vi nå bygger et mer robust system, sier sier for NKSD Stein Are Aksnes. #Sjeldendagen #Rarediseaseday @Oslounivsykehus @Sjeldendiagnose @TRS_Sunnaas @Frambu @helsesorost

[Sjeldne diagnoser @Sjeldne]

5 europeiske forhold som også påvirker det norske Sjeldenfeltet. Tør Norge plukke opp ballen spør @RSkarberg #Sjeldendagen https://t.co/XhddObHHyW @Oslounivsykehus @Frambu @FFOtweet @helsesorost

[EURORDIS-Rare Diseases Europe @eurordis]

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.

[EURORDIS-Rare Diseases Europe @eurordis]

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

[Rebecca T. Skarberg @RSkarberg]

I'm attending the 11th ECRD online on 27 June - 1 July 2022! Will you join me? https://t.co/kP2TCVnCAV

[European Reference Network on Rare Bone Diseases @ern_bond]

We are happy to inform you about the ERN BOND WG5 publication "Patients' priorities and expectations on an EU registry for rare bone and mineral conditions". @KassimJavaid @marinamordenti @LucaSangiorgi1 @ingunn_w @InesA_Beyond @RSkarberg @CGrasemann https://t.co/XC4upQQqOx

[Foresight in Rare Disease Policy @rare2030]

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

[Rebecca T. Skarberg @RSkarberg]

@ern_bond @eurordis Thanks! But first up is my thoughts on Rare2030 at 14:00! Stay tuned!

[Rebecca T. Skarberg @RSkarberg]

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

[Rebecca T. Skarberg @RSkarberg]

@LucyintheskyLu @eurordis Thank you! Together we are strong!

[EURORDIS-Rare Diseases Europe @eurordis]

Yesterday was a great day at @Europarl_EN with a great turnout for our #RareDiseaseDay Policy Event. Thank you to everyone who joined us! @tfajon @TomislavSokol @Konecna_K @Kympouropoulos @rarediseaseday

[Rebecca T. Skarberg @RSkarberg]

@OIFE_OI Rare is many. Rare is strong. Rare is proud! 💪

[Ines Hernando @inesernando]

'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

[EURORDIS-Rare Diseases Europe @eurordis]

.@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”

[European Reference Network on Rare Bone Diseases @ern_bond]

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