Nearly half a million Europeans live with a rare cancer. Despite the rarity of each individual cancer type, around 200 clinically different rare cancers represent in total about 20% of all cancer cases, including all cancers in children.

Rare cancers, like other rare diseases, pose particular challenges due to their low incidence. Whilst ECPC represents all cancers addressing cross-cutting issues like prevention, screening, early intervention, research and clinical trials, and access to best quality treatment and care, some of ECPC's activities have targeted the specific challenges of rare cancers. The activities are described below.

ECPC Position Paper on Rare Cancers

• ECPC Position Paper on Rare Cancers: Realising the Vision of Equity: The Optimal Care and Treatment of Rare Cancers in Europe 

Call to Action against Rare Cancers

This multi-stakeholder initiative has been established in 2009 as a partnership of cooperating 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 practice. Considering these challenges, the initiative campaigns to implement the Political Recommendations on Stakeholder Actions and Public Policies that emerged from the rare tumours conference in 2008.  See website of "European Action Against Rare Cancers".

The initiative has recorded a number of "Live Call to Action testimonial videos".Watch the videos here with Paola Casali (ESMO), Sandy Craine (ECPC), Kathy Oliver (IBTA), Jean-Yves Blay (EORTC), and Jan Geißler (ECPC) to learn how you can make a difference through your support of the signature campaign.

ECPC Rare Cancer Action Group

Some ECPC members felt that ECPC should support its membership in coordinating rare cancer activities across diseases, in order to address the special challenges that all rare cancers have, e.g. the lack of local medical expertise, leading to late diagnoses and poor referral rates, or the challenges of capacity building when funding and public attention barely exists for that disease. Therefore, in early 2010, ECPC has decided to start an "ECPC Rare Cancers Action Group" for those members representing rare cancers. Whilst it is still in an early phase and priorities are currently being discussed by ECPC's membership, Board and staff are committed to start joint initiatives and partnerships.

The Action Group's key goals are:

1. Share best practice and collaboration
2. Raise awareness about the specific challenges of rare cancers
3. Understand existing policy in the context of rare cancers
4. Support capacity building of rare cancer patient groups
5. Build partnerships on rare cancers with international organisations

RARECARE Project - Surveillance of Rare Cancers in Europe

The RARECARE Project (2007-2010) was co-funded by the European Commission (EC) through its Public Health and Consumer Protection Directorate (DG SANCO), PHEA programme.

RARECARE has estimated the burden of rare cancers in Europe, including indicators like prevalence, incidence and mortality. It provides an operational definition of "rare cancer" (by incidence and prevalence) and a list of cancers meeting that definition. Its information is based on data from 70 population-based cancer registries which were collected and harmonized by leading epidemologists. The RARECARE list, the scientific project results and more information is available on the RARECARE website, See http://www.rarecare.eu/

The RARECARE list contains rare tumours with an incidence less than 6 per 100,000 persons/year. The list presents the number of cases reported by European cancer registries during the period 1995-2002 and the corresponding incidence rates.

ECPC was a member of the advisory board of RARECARE and was involved in dissemination work package of the project results.

Other Rare Cancer initiatives ECPC is or has been involved in

• EU Commission's Rare Disease Task Force where ECPC acted as observer until 2009. In July 2010, Jan Geissler has been appointed as alternate member of the successor of the Rare Disease Task Force called EU Committee of Experts on Rare Diseases.
• EU Commission Communication on European Action in the Field of Rare Diseases
  In November 2008, the European Commission released a Communication and proposal for a Council Recommendation on Rare Diseases. Previously, ECPC informed their members about this initiative and participated in the public consultation. See http://www.ecpc-online.org/newsletter/member-updates/126-mu112008-rare-diseases.html, including ECPC background paper.

• UNESCO, Danish Cancer Society and ISE Meeting:
  World Class Infrastructure: A Platform for European Cancer Research Centres For Translational Research. Paris, October 15th 2008. ECPC was represented on a roundtable panel discussion and quoted in 'Molecular Oncology' 2008 1-4

• ESMO Conference 'Rare Tumours in Europe: Challenges and Solutions', Brussels, November 6th 2008.
  ECPC was represented on the organising committee, the taskforces for all three workshops and the steering committee. ECPC representatives gave presentations at the final plenary and one workshop session. See http://www.esmo.org/events/past-events/rare-cancers-2008.htm

Further reading

• Article in CancerWorld March/April 2009: "Europe's rare cancer community calls for a more radical approach". See also CancerWorld Portal.