Rare cancers

Rare cancers are rare occurrences of a common disease affecting less than 6 per 100,000 individuals a year, or one in five new patients diagnosed with cancer.

There are an estimated 5.1 million people living with a rare cancer across Europe, with about 650,000 new diagnoses annually and 200 types of rare cancers.

The rare disease community and the rare cancer community are sometimes regarded as two different worlds. However, this is far from the 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:  

  • 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.
     
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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:

  • As a member of the Committee for Orphan Medical Products (COMP) at the European Medicines Agency since 2000, EURORDIS has played an instrumental role in reviewing applications for orphan drugs designation to treat some of these rare cancers.
  • From 2014 to 2017, EURORDIS was also a member of the European Commission Expert Group on Cancer Control voicing the needs of rare cancer patients.
  • Currently, there are four main European Reference Networks for rare cancers (ERNs): PaedCan (paediatric cancers), EURACAN (rare solid tumours in adults), EuroBloodNet (rare haematological diseases and malignancies), GENTURIS (genetic tumour risk syndromes). Rare cancer patient advocates in the ePAGs (European Patient Advocacy Groups) for these ERNs ensure that the patient voice is heard and their needs are integrated in the governance and development of these networks. EURORDIS provides them with a continuous coordination support.
  • 2019 was a milestone for the rare cancer community as it adopted the Rare Cancer Agenda 2030 with its 10 main recommendations, paving the way to improve rare cancer research and care through effective policies, and supporting the development of ERNs. The recommendations build on the significant work done through the European Joint Action on Rare Cancers (JARC, 2016 – 2019), which brought together 60 partners from 23 European countries, including EURORDIS, the European Cancer Patient Coalition (ECPC) and Childhood Cancer International-Europe (CCI-E).
  • A study published by the European Cancer Organisation in July 2020, Strengthening Europe in the Fight Against Cancer: Going further, faster, further emphasises the specific requirements and opportunities for progress for rare and childhood cancers.
  • Finally, the recommendations set out in the “Rare Cancer Agenda 2030” and in the European Cancer Organisation’s study are timely to help shape the Europe’s Beating Cancer Plan and the work of the Cancer Mission on research to promote a comprehensive policy for rare cancers that meets the needs and expectations of the patients and their carers. They are also meant to inspire the inclusion of rare cancers in each national cancer control programme in Europe.

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:

  • WECAN, the Workgroup of European Cancer Patient Advocacy Networks
  • Rare Cancers Europe
  • The European Cancer Organisation Patient Advisory Committee
  • The European Hematology Association working group with patients’ organisations

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

Resources on rare cancers

Resources:

Relevant organisations & networks:

 

Page created: 15/03/2021
Page last updated: 15/03/2021
 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases