Governance principles

1) Rare Cancers Europe is not a registered organisation or legal entity but an informal European multi-stakeholder partnership initiative of currently 31 independent national and international organisations, societies, groups, networks, institutions and companies.

2) Rare Cancers Europe is an initiative that brings together European stakeholders with a common aim and commitment to raise awareness about the burden of rare cancers and to tackle rare cancers as an EU health priority. To ensure equal and fair representation, all stakeholders whose objectives fall in line with the overarching aim of Rare Cancers Europe are welcome to join the initiative. However, in order to obtain balanced stakeholder representation, partners representing a specific organisation or interest area shall as far as possible be represented by umbrella organisations operating across multiple European countries. Where European organisations do not exist, national rare cancer groups are welcome as partners.

3) The initiative is based on the understanding that its main mode of operation is “working together in partnership”.

4) All decisions directly or indirectly affecting the partnership (strategy, projects, activities, admission of new partners, etc.) are consensus-based and always taken in a fully transparent fashion. This also applies to decisions taken by any working group, task force, committee or other body created by the partnership.

5) The partnership has agreed that the European Society for Medical Oncology (ESMO) leads the initiative, runs its Secretariat and serves as the partnership’s fiscal agent.

6) Each cooperating organisation is represented by one official representative in the Campaign Organisation Committee where their representatives work together as equal partners.

7) Partnership decisions require a majority of two-thirds (2/3) of the partners represented in the Campaign Organisation Committee. Each partner has one vote.

8) There is no veto power but every partner has the right to opt out of any project or activity that they do not wish to be involved in. This would then be publicly acknowledged on the partnership Web site.

9) Decisions can be taken either face-to-face at the twice-yearly partnership meetings, or by email or telephone conference. Meeting agendas are drafted by the Secretariat and circulated to all partners two weeks prior to the meeting for review, comments and approval.

10) Progress reports are prepared by the Secretariat and circulated to all partners at least on a quarterly basis.

11) It is not foreseen that individual partners, groups of partners, or a body created by the partnership take decisions on behalf of the partnership, unless all partners were given the opportunity to express their views concerning the decisions in question.

12) Grant agreements with corporate supporters are based on the understanding that the grant activity will be “independent, non-promotional and free from commercial influence or bias”. There are no governance-related privileges foreseen for corporate supporters.

13) There are no governance-related privileges foreseen for founding partners.

200. Call to Action