#rdctn - Twitter Hashtag

Debra - The Butterfly Skin Charity @debraireland

over 1 year ago

Debra's Head of Research @SSineadHickey and Registry Coordinator @cuttyla from @SkinRegs at the @rare_trial Conference. Where they presented on the #EBregistry - a vital resource for driving progress in #EBcare and #EBresearch. #RDCTN @hrbireland @HRCIreland

debraireland's tweet photo. Debra's Head of Research @SSineadHickey and Registry Coordinator @cuttyla from @SkinRegs at the @rare_trial Conference. Where they presented on the #EBregistry - a vital resource for driving progress in #EBcare and #EBresearch.

#RDCTN @hrbireland @HRCIreland https://t.co/3hZ2VyY83B

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Dr Suja Somanadhan @sujas15

over 3 years ago

Thank you Anne Lawlor and PPI experts and researchers for your incredible commitment and contribution to this innovative and creative project #RAINDROP as a result we have a #RDCTN and many more initiatives to come soon 🔜 #project #creative #raredisease…https://t.co/1Yc5gKibTX

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Rachel Crowley @rachsail

over 3 years ago

Seconding this - the HRCI team ARE lovely, they're making a difference to patient-centred research in Ireland and we want to work together to make that difference even bigger @UCDClinRes @UCDMedicine @RareDiseasesIE #RDCTN

Avril Kennan 🌍 @AvrilKennan

over 3 years ago

I'm hoping for another enthusiastic & dedicated person to join our lovely @HRCIreland team. This post, co-hosted with @UCDMedicine, will support PPI in the new Rare Disease Clinical Trial Network. Closing date 15th Feb. Get in touch with any questions👉https://t.co/uADtdN0GBs

AvrilKennan's tweet photo. I'm hoping for another enthusiastic & dedicated person to join our lovely @HRCIreland team. This post, co-hosted with @UCDMedicine, will support PPI in the new Rare Disease Clinical Trial Network.

Closing date 15th Feb. Get in touch with any questions👉https://t.co/uADtdN0GBs https://t.co/hqc6RlaxLn

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Rachel Crowley @rachsail

almost 4 years ago

Really important that revision enables access to more treatments for more patients with rare disease - academic sponsors will not be left behind; patients must have a say; meaningful outcome measures for trials and access programmes all key. #RDCTN @UCDMedicine @HRB_NCTO

EURORDIS-Rare Diseases Europe @eurordis

almost 4 years ago

We are calling on the European Union to create a robust regulatory framework for transformative treatments through the Revision of the EU Regulation on Orphan Medicinal Products. Read more about how this could be done: 🔗 https://t.co/L2ghyfjG3J