Eurordis - Rare Disease Europe

Asociația Română De Cancere Rar/ Romanian Association for Rare Cancers

The EHE Rare Cancer Charity

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 […]

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

Patients with Cancer and Rare Diseases Support Association

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

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 […]