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Interview with Yann Le Cam: Reflecting on a Quarter Century as Chief Executive Officer
We speak to Yann about what strategic approaches have been central to EURORDIS’ success, the ways that the organisation has evolved, and what the future looks like.
HTx – Next Generation HTA
HTx – Next Generation HTA (Health Technology Assessment) is a Horizon 2020 project supported by the European Union. The main aim of HTx is to create a framework for the Next Generation Health Technology Assessment (HTA) to support patient-centered, societally oriented, real-time decision-making on access to and reimbursement for health technologies throughout Europe. Project duration: […]
REMEDI4ALL: facilitating the repurposing of medicines
Officially launched on 1 September 2022, the REMEDI4ALL project aims to create a support infrastructure for projects, led by academic researchers, clinicians and potentially patients, to identify, test and validate new therapeutic indications for existing medications. Funded for five years by the European Commission to the tune of €23 million (Horizon Europe programme), it involves […]
EURORDIS and partners launch major project to empower patient involvement in Health Technology Assessments
EURORDIS-Rare Diseases Europe launches European Capacity Building for Patients (EUCAPA) project.
How to raise awareness among healthcare providers?
With Rare Disease Day fast approaching, we invite you to attend our webinar on Tuesday 31st January 2023 at 5:30 PM (CET) discussing ‘How to raise awareness among healthcare providers’. For this webinar, we will be joined by three speakers from our national alliance partners with experience on the subject: A 10 – 15 minute […]
COVID-19 Information Resource Centre
Please find below EURORDIS statements, sources of official information and information/activities organised in response to the pandemic which we have received through our network. If you have any updates from the rare disease community on how your organisations are responding to the COVID-19 crisis please contact: eurordis@eurordis.org. EURORDIS Response EURORDIS Rare Barometer survey on COVID-19 EURORDIS […]
REMEDi4ALL, an ambitious EU-funded research initiative, launches to drive forward the repurposing of medicines in Europe
1 September, Paris – REMEDi4ALL, an ambitious EU-funded research initiative, launches to drive forward the repurposing of medicines in Europe REMEDi4ALL launched today with the aim of making a major leap forward in drug repurposing. This promising approach to drug development consisting in the identification, testing, and validation of new therapeutic indications for existing medications, […]
2021 marketing authorisations
See a list of orphan medicines currently authorised in the EU. Elzonris® (tagraxofusp) Stemline Therapeutics B.V. Adults with blastic plasmacytoid dendritic cell neoplasm (BPDCN) 07/01/2021 Inrebic® (fedratinib) Celgene Europe BV Adults with myelofibrosis (a rare form of blood cancer) 08/02/2021 Lumoxiti® (moxetumomab pasudotox) AstraZeneca AB Adults with hairy cell leukaemia, a cancer of the white […]
EURORDIS announced the recipients of the 2022 Black Pearl Awards
16 February, Paris – EURORDIS-Rare Diseases Europe is pleased to announce the recipients of the 2022 Black Pearl Awards: Media Award – EwenLife Members Award – Childhood Cancer International Europe (CCI-E) Lifetime Achievement Award – Dr. William Gahl Volunteer Award – Graham Slater Company Award for Patient Engagement – European Alliance for Newborn Screening in SMA Company Award for Health Technology […]
Special New Year’s message from EURORDIS Chief Executive Officer, Yann Le Cam
A special message from Yann Le Cam, EURORDIS Chief Executitve Officer on the aspirations of the rare disease community for 2022. 2021 ended as it started, with COVID-19 spreading across Europe, threatening the lives of many, especially those living with a rare disease and their families. We have all had to be especially careful, which […]