About Us
Search Results for: rare cancer
Total Results: 87
REMEDI4ALL: facilitating the repurposing of medicinesÂ
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 […]
Meet the Board: Our Vice-Presidents
Dorica Dan and Maria Montefusco, EURORDIS Vice-Presidents, talk about what priorities will be fundamental to our organisation's growth.
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 […]
European Patient Advocacy Groups (ePAGs)
Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs). ePAG essentials In 2017, following years of advocacy efforts from the rare disease community and EURORDIS, the European Commission launched 24 European Reference Networks (ERNs) specialised in rare or low-prevalence complex diseases, which provided an unprecedented […]
Partnerships
EURORDIS partners with many organisations who play a role in working towards improving the lives of people living with a rare disease. Learned societies European Connected Health Alliance European Federation of International Medicine European Hospital and Healthcare Federation The European Society of Human Genetics International Federation of Social Workers, Europe ISPOR Improving healthcare decisions European […]
Our Strategy & Impact
After conducting a strategic review, EURORDIS made public its 2021 – 2030 strategy that was adopted by the members at the 2021 EURORDIS General Assembly and then reviewed and adopted by the Board of Directors in 2022. EURORDIS Strategy Strategic objectives 2021 – 2030 A new European policy framework on rare diseases Delivering on 6 priority […]