Eurordis - Rare Disease Europe

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:   

• A long and difficult journey to diagnosis,
• A lack of or disrupted access to appropriate health/ social care and medicines,
• A lack of doctors with relevant expertise in their country, and
• Few available treatments, among many other challenges.

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 advocating to improve access to diagnosis and healthcare for people affected by rare cancers. See further below for advocacy actions taken by the rare cancers community, EURORDIS and our members.

Looking to the future

The European Commission is in the final stages of building its Europe’s Beating Cancer Plan. It is vital that the needs of people affected by rare cancers are accounted for in the implementation of this plan.
After a consultation with our members and rare cancer European Patient Advocacy Group (ePAG) advocates, and in collaboration with Rare Cancers Europe, EURORDIS contributed to the recent consultation on the Beating Cancer Plan (first on the road map and then the consultation).
Valentina Bottarelli, Public Affairs Director, EURORDIS, commented, “We need the newly published JARC recommendations on rare cancer care to become an integral part of national cancer plans, including through the European Reference Networks. Through the ePAGs, we will continue to build patient engagement in rare cancer ERNs and European rare cancer policy actions. We were delighted to meet with Stella Kyriakides, European Commissioner for Food & Health Safety in January and to hear of her support for ensuring rare cancers are integrated in the Beating Cancer plan.”

Timeline of advocacy actions in rare cancers

• 2020:  Publication of research findings in a Journal of Cancer Policy article: Priorities on rare cancers’ policy in National Cancer Control Plans: A review conducted within the framework of EU-JARC Joint Action.
• 2019: The publication of the Rare Cancer Agenda 2030 book, setting out 10 recommendations to improve rare cancer care.
• 2017 – 2020: In 2017, following advocacy efforts of the rare disease community, the European Commission launched 24 European Reference Networks, including four networks specifically relevant to rare cancers: EURACAN, PaedCan, EuroBloodNet, GENTURIS. To ensure the patient voice is heard in the ERNs, EURORDIS created the European Patient Advocacy Groups (ePAGs). Rare cancer patient advocates in the ePAGS ensure the needs of their patient communities are integrated in the governance and development of the four relevant ERNs.  
• 2016 – 2019: EURORDIS was actively involved as an associate partner in the European Joint Action on Rare Cancers (JARC). European joint actions are a vital policy mechanism to implement priority action of the EU Health Programme with the support of Member States and other stakeholders. Since 2016 EURORDIS is also a member of WECAN, the Workgroup of European Cancer Patient Advocacy Networks.
• 2015: Based on a consultation with its members, EURORDIS published a mapping document setting out the similarities and differences between rare cancers and rare diseases. This publication was requested by patients with the objective of identifying priority advocacy actions need to be carried out jointly by rare cancer and other rare disease organisations.
• 2014 – 2017: EURORDIS represented the patient voice at the European Commission Expert Group on Cancer Control for rare cancers.  
• 2008:  EURORDIS supported the creation of Rare Cancers Europe with other patient organisations. Rare Cancers Europe plays a vital role in bringing together organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practices.
• Since 2000: As a member of the Committee on Orphan Medical Products at the European Medicines Agency since 2000, EURORDIS has played an instrumental role in improving patients’ access to medicines for rare cancers by reviewing applications for orphan drugs designation intended to treat rare cancers.

>> For more information about the work of EURORDIS in the area of rare cancers please contact Ariane Weinman, Public Affairs Senior Manager: ariane.weinman@eurordis.org.

Eva Bearryman, Communications Manager, EURORDIS