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.

See full list of members

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
Resources on 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

RARECARENet – Information network on rare cancers
The Rare Cancer Agenda 2030, which sets out 10 recommendations to improve rare cancer research and 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 (2019)
Rare Cancers in All Policies – A Rare Cancers Europe Call to Action (2021)
The Recommendations from the Rare 2030 Foresight study to shape a new policy framework for rare diseases (2021)
The Strengthening Europe in the Fight Against Cancer: Going further, faster study produced by the European Cancer Organisation (ECO), which includes a section on rare cancers co-authored by EURORDIS (2020)
Article co-authored by EURORDIS: Priorities on rare cancers’ policy in National Cancer Control Plans (NCCPs): A review conducted within the framework of EU-JARC Joint-Action (2020)
Mapping document setting out the similarities and differences between rare cancers and rare diseases, based on a consultation with EURORDIS members (2015)
Leaflet on the 4 rare cancer ERNs.

From the European Commission:

Europe’s Beating Cancer Plan (3 February 2021)
Implementation Plan of the European Mission on Cancer (29 September 2021)

From the European Parliament:

“Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy” – Report of the Special Committee on Beating Cancer (BECA) adopted by the European Parliament (16 February 2022)

Coordinated by

Ariane Weinman,
Public Affairs Senior Manager

ariane.weinman@eurordis.org