Date: 29 February 2024

On Rare Disease Day, 29 February 2024, we come together to raise awareness and celebrate the strength and resilience of those affected by rare diseases. At the heart of our efforts lies a commitment to drive positive change, empower patients, and advance the quality of care for rare disease patients.

Date: 17-20 September 2024

This course, organised by members of the ERN GENTURIS, aims to deliver up-to-date knowledge on hereditary cancers to clinical and molecular geneticists in training or certified. The programme is available here and the registration will open soon. More information will follow.

On 15-16 May 2024, the 12th European Conference on Rare Diseases (ECRD) will be held in Brussels and online!

The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe, bringing together people with rare diseases and patient advocates, policymakers, healthcare industry representatives, clinicians, regulators and Member State representatives. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1,500 advocates, experts, policymakers and industry professionals from the rare disease community.

All 24 European Reference Networks (ERNs) launched a dedicated website (https://www.erncare4ua.com/) and social media campaign (#ERNcare4Ua) to collect information to help health professionals find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

In addition, the Coordinators of the 24 European Reference Networks (ERNs) have issued a statement to support people with Rare Diseases and Complex Conditions affected by the war in Ukraine.

If you are a patient with a genetic tumour risk syndrome coming from Ukraine or a treating physician and you require medical assistance, please contact us at: genturis@radboudumc.nl.

WE ARE HERE TO HELP!