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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.
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 […]
EURORDIS-Rare Diseases Europe elects new Board of Officers
28 November 2022, Paris – EURORDIS-Rare Diseases Europe, a patient-led alliance of 1000 rare disease member organisations, announces a new leadership team, in line with its next-decade strategy. The EURORDIS Board of Directors elected a new Board of Officers at its meeting on 25–26 November. Avril Daly, EURORDIS Vice-President and Acting President since June 2022, […]
Czech Deputy Health Minister calls for a European Union Action Plan on rare diseases, as Czechia takes over the EU Presidency
1 July, Paris – Closing the European Conference on Rare Diseases and Orphan Products 2022, Czech Deputy Health Minister, Jakub Dvořáček gave a strong message to the European institutions and rare disease community, saying that the Czech Republic, which begins today its six-month EU Presidency, will “continue to support enhanced cooperation and coordination between EU Member States […]
What is a rare disease?
The impact Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offerings inadequate and research limited. Despite […]
EURORDIS-Rare Diseases Europe calls on the European Commission for decisive action on rare diseases
Ministerial Conference hosted by the French EU Presidency in Paris on Rare Disease Day 2022 sees an appetite for coordination on rare diseases from EU Member States, the European Parliament and WHO-Europe, however, reinforces the European Commission’s lack of a strategic vision and ambition to keep up with the challenges. 28 February 2022, Paris – On Rare […]