A Message from the European Cancer Patients Coalitiion
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. This includes e.g. participation in the EU-funded RARECARE project, or ECPC's Position Paper on Rare Cancers, or being an observer in the EU Commission's Rare Disease Task Force, or being a partner in the European Action Against Rare Cancers.
ECPC Rare Cancers 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, ECPC has decided to start an "ECPC Rare Cancers Action Group". Whilst it is still in an early phase and priorities would still need to be discussed by our membership, ECPC 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
If you are interested to be kept updated on the new "ECPC Rare Cancers Action Group", please let Jan know at This e-mail address is being protected from spambots. You need JavaScript enabled to view it and he'll add you to the list for updates!
Rare Disease Day, 26 February 2010
On 26 February, Rare Disease Day is being held again. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level. ECPC is very supportive of the initiative, and we think it is a good opportunity to contribute with stories and support from the rare cancer community.
Apart from activities that might take place in your country on Rare Disease Day, there are a number of activities you (and your individual members of your patient group) could do to contribute via the Internet:
- Sign-up to be a 'Friend of Rare Disease' which will give endorsement and visibility to your activity on the global "Rare Disease Day" website. Sign up here: http://www.rarediseaseday.org/friends_of_rare_disease_day/becomefriend
- Become a fan of "Rare Disease Day 2010" on Facebook. http://www.facebook.com/rarediseaseday2010
- Share your Rare Cancer testimony (photo/video) with that of others living with a Rare Disease here: http://www.rarediseaseday.org/yourstory