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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 their conditions:

Rare Cancer Advocates Network

The Rare Cancer Advocates Network has been established by EURORDIS to increase the visibility of the collective work of rare cancer patient advocates for raising awareness of rare cancer patients’ challenges and needs, across all types of rare cancers and ages.

The Rare Cancer Advocates Network is made up of ePAGs across the four ERNs relevant to rare cancers (PaedCan, EURACAN, EuroBloodNet, GENTURIS) and ePAGs in other ERNs’ subnetworks covering rare tumours (e.g. ENDO ERN/ rare endocrine tumours).

Together, the Rare Cancer ePAGs forming the Rare Cancer Advocates Network, work towards the development and sustainability of European Reference Networks as well as join forces to advocate for fostering research and improving timely access to diagnosis, treatments, care and follow-up care for those affected by a rare cancer.

There are four ePAGs who represent the Network together with EURORDIS in meetings with European Institutions. Each of them represents one of the four main groups of rare cancers:

Relevant Organisations & European Reference Networks 

EURORDIS is a member of the below organisations and partners with European Reference Networks relevant to rare cancers

Advocating for people living with a rare cancer

There are nearly 70 EURORDIS member patient organisations representing people affected by rare cancers. For over two decades, EURORDIS has been voicing the needs and expectations of people affected by rare diseases, including rare cancers.

People affected by rare cancers have benefited from EURORDIS’ actions in promoting policies and regulations that foster research for rare diseases/rare cancers and improve patients’ access to a timely, accurate diagnosis and adequate treatments.

Timeline of key milestones:

In the frame of its actions, EURORDIS is a member of several organisations that play a vital role in placing cancers and rare cancers high on the European policy agenda:

EURORDIS and many other organisations have endorsed the European Code of Cancer Practice, “championing the rights of cancer patients across Europe”.

Resources on rare cancers

From the European Commission:

From the European Parliament:

Coordinated by

Ariane Weinman,
Public Affairs Senior Manager