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Advocacy in action at Rare Disease Week
We highlight the empowering experiences of past participants at Rare Disease Week, where advocates reflect and share their aspirations for driving change.
EURORDIS: Greater focus needed on rare diseases in EU health mandate
EURORDIS responds to the unveiling of new European Commission portfolios.
Claudia Fuchs: The potential of drug repurposing in rare diseases
Claudia Fuchs, our Drug Repurposing Projects Senior Manager, is inviting manuscripts for a special journal issue on drug repurposing.
EURORDIS Launches Pre-Election Campaign for Rare Disease Equity
EURORDIS releases its eight key policy recommendations for the EU's next policymakers.
Rare Disease Day 2024: Unite for change! Unite for equity!
As we approach Rare Disease Day 2024, taking place on 29 February, we look at its significance and how to get involved.
37th Workshop of the EURORDIS Round Table of Companies (ERTC) : Transforming rare disease foresight into action
How can additional measures support the development of available, accessible and affordable treatments for rare disease patients? Wednesday, 21st February 2024, Doubletree by Hilton Brussels City in Brussels Agenda Programme and Concept Note Overarching goal and scope As we are all looking to the details of the revision of the EU general pharmaceutical legislation, we […]
EURORDIS: Support for ‘most successful innovation’ of expert rare disease networks must continue
EURORDIS and the European Reference Networks (ERNs) write a letter calling for continued support for the Networks.
Revisions for the better: How Europe should boost the development of rare disease medicines
The European Commission will very shortly be releasing their proposed legislative revisions to the Orphan Medicinal Products (OMP) Regulation, which was first introduced by the EU in 2000 to boost industry investment into the development of medicines for rare diseases. Since its introduction, the OMP Regulation has been positively transforming the health care and lives of […]
MEPs call on Commission President to deliver overdue strategy on rare diseases
MEPs write to European Commission President Ursula von der Leyen on Rare Disease Day.
“We were on a mission!”: Advocates reflect on their time at Brussels Rare Disease Week
On 6-9 February 2023, 38 rare disease advocates from across Europe convened in Brussels for Rare Disease Week. During the week, participants engaged in training and practical efforts to influence policymaking on behalf of the tens of millions of people living with rare diseases across the continent. After everyone returned to home to their respective […]