The Voice of Rare Disease Patients in Europe

The Momentum Builds: European Economic and Social Committee calls for an action plan on rare diseases

The European Economic and Social Committee (EESC), the EU body responsible for relaying the voice of Europe’s civil society to policymakers, recently published its Opinion on Ensuring strong European solidarity for rare disease patients. The EESC’s Opinion calls for the EU to deliver a goals-based European action plan on rare diseases, which EURORDIS has long supported.

Although the Committee laments the fragmented policy approaches pursued thus far, the EESC shines a light on the opportunities to improve EU policies. We take a look at some of the EESC’s recommendations, and explain how their adoption would improve the lives of people living with a rare disease.

Ahead of the EU’s highly anticipated Revision of the Orphan Medicinal Products and Paediatric Regulations, EURORDIS has published its Proposal on how the Revision should create a regulatory framework that drives innovation and improves access to transformative rare disease treatments.

Rare Diseases International (RDI) has been calling for the World Health Organization (WHO) to adopt a Resolution on Universal Health Coverage for Rare Diseases. RDI has today extended to 16 December the deadline of its survey on what Key Asks should be included in this WHO Resolution.

WHAT’S NEW AT EURORDIS?

On 29 November, Yann Le Cam, our Chief Executive Officer, will be speaking at Friends of Europe’s health summit: Reimagining health systems: green, agile, and citizen-centred. Yann will speak at a discussion on the Changing roles of citizens in health. The in-person event will also be livestreamed.

On 24-25 November, the European Commission will host and livestream the European Day of Persons with Disabilities conference. The event will be attended by our Social Policies & Initiatives Director Raquel Castro, and will shine a light on young people and efforts to protect the rights of persons with disabilities.

The Open Academy has launched two new online learning courses for patient advocates. The courses are freely available to take, and provide an introduction to the main European Union institutions and explain how EU legislative decisions are reached. Enrol now.

On 22 November, the World Duchenne Organization will be hosting an International Meeting on FAIR Data Visiting for Duchenne and other Rare Diseases. The meeting will be opened by our Board Member Elizabeth Vroom and address how ‘FAIR’ principles can optimise the use of patient data.

Celebrating EURORDIS’ 25th anniversary, our colleagues and Board members highlight our major achievements over the past quarter-century. Watch our video series reflecting on why the work of EURORDIS and our community matters, and how we are moving forward.

Virginie Hivert, our Therapeutic Development Director, features as one of the three guest editors in the latest special issue of Frontiers in Pharmacology. The edition focuses on the use of Real-World Data for regulatory purposes in the rare disease setting.

On 12 December, we will host the webinar: Exchange of ePAG Good Practice – Patient Clinician Teambuilding Pilots. The webinar will hear ePAG advocates and ERN managers share their advice on developing successful collaborations and organising team-building sessions within your ERN.

This Sunday 20 November will mark the beginning of a 100-day countdown to Rare Disease Day on 28 February 2023! Learn more about how you can get involved with the campaign, and stay up to date on all the latest resources and upcoming events and webinars.

Follow us