Eurordis - Rare Disease Europe

Asociația Română De Cancere Rar/ Romanian Association for Rare Cancers

Patients with Cancer and Rare Diseases Support Association

The EHE Rare Cancer Charity

EU Joint Actions on Rare Diseases and on Rare Cancers

What is an EU Joint Action? A “Joint Action” is a collaborative action co-funded by the European Commission and Member States of the European Union on priority health issues, that deserve to be tackled at the European level. The objective is to elaborate joint proposals and recommendations aimed at providing a better support at European, […]

Rare Cancers

The rare disease community and the rare cancer community are sometimes regarded as two different worlds. However, this is far from reality. Based on the findings of a study conducted by EURORDIS amongst 60 rare cancer patient organisations, patients and their families share the same burden and face similar challenges created by the rarity of […]

Rare Adult Cancers Included in the Final Report of the European Parliament’s Special Committee on Beating Cancer

9 December 2021, Paris – EURORDIS-Rare Diseases Europe welcomes the European Parliament’s Special Committee on Beating Cancer (BECA) decision to integrate a section on rare adult cancers – which is lacking in the Europe’s Beating Cancer Plan – in their final report adopted on 9 December 2021 “Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy.” […]

New European recommendations on rare cancers

There are an estimated 5.1 million people living with a rare cancer across Europe and 200 types of rare cancers according to RARECARENet. As outlined in the recently published Rare Cancer Agenda 2030 book, rare cancers are rare occurrences of a common disease and affect one in five new patients diagnosed with cancer. Rare cancers contribute to 20-30% of the new cancer cases across EU Member States and there are an estimated 650,000 new diagnoses of rare cancers annually in Europe. The new Rare Cancer Agenda 2030 book sets out 10 recommendations to improve rare cancer care through effective policies and is based on the work done through the European Joint Action on Rare Cancers (JARC, 2016 – 2019), in which EURORDIS was an active partner alongside fellow patient organisations including the European Cancer Patient Coalition and Childhood Cancer International-Europe. The rare disease community and the rare cancer community are sometimes regarded as two different worlds. But this is far from the reality, as patients and their families share the same burden and face similar challenges created by the rarity of their conditions:   

RARE CANCER AGENDA 2030 – Ten Recommendations from the EU Joint Action on Rare Cancers

Rare Cancers Europe, a collaborating partner of the recently completed EU Joint Action on Rare Cancers (JARC), is committed to take over the JARC legacy and to support the rare cancer community towards the effective implementation of the Joint Action’s overarching deliverable, namely the Rare Cancer Agenda 2030. In the next years RCE will continue […]

Rare Cancers and Rare Diseases: Similarities and Differences

ECPC-EURORDIS joint workshop on rare disease/cancer patient registries