24 September 2011: European Multidisciplinary Cancer Congress highlights challenges posed by rare cancers

On 24 September 2011, the 2011 European Multidisciplinary Cancer Congress, held from 23-27 September 2011 in Stockholm, Sweden, organised the first-ever patient advocacy/ethics session dedicated specifically to rare cancers.

Entitled The Challenges of Rare Cancers, the session provided a great (and rare!) opportunity for patient advocates and professionals to enter into a lively debate about the specific challenges posed by rare cancers. In the European Union, rare cancers are classified in the group of rare diseases (prevalence of less than 5/10,000). Taken collectively, however, rare cancers are not rare at all: They affect around 4 million people in the EU alone and represent in total about 20% of all cancer cases, including all cancers in children.

Rare cancers are extremely challenging due to an often late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise, high uncertainty in clinical decision-making, very limited number of clinical studies, lack of interest in developing new therapies, and the scarcity of available registries and tissue banks.

However, the session also demonstrated how these challenges can be effectively addressed, namely by improving research infrastructures, the methodology of clinical studies and the organisation of healthcare and by collaboratively advocating for the development of effective cancer therapies, for balanced and timely assessment of new therapies and for equal access to the best standards of care across Europe.

In addition, increasing peer-to-peer support, providing more information and education for patients and healthcare professionals, building networks of clinical databases, rare cancer registries and tissue banks, and establishing sustainable partnerships and collaborations between all stakeholders involved will help to make a difference in addressing the challenges associated with rare cancers. Corresponding European initiatives are already under way. For example, Rare Cancers Europe, a multi-stakeholder initiative of some 20 collaborating partners across Europe, is working together to address the specific challenges posed by rare cancers.

Session programme and speakers:

  • Co-Chair: K. Oliver (United Kingdom)

16:00 Introduction

  • Co-Chair: R. Schaefer (Germany)

16:05 Four Million Reasons Why we Need to Improve The Rare Cancer Journey

16:20 Questions and Answers

16:25 Rarity and Research - Challenges for The International Cancer Community

  • Speaker: J.Y. Blay (France)

16:40 Questions and Answers

16:45 Rare Cancer Advocacy Groups and The EMA - Creating a Sustainable Partnership

17:00 Questions and Answers

17:05 We Are Here To Help - How Patient Organisations Can Help You Navigate on The Journey

17:20 Questions and Answers

17:25 The RARECARE Initiative

17:40 Concluding Remarks & Discussion

200. Call to Action