Our Governance

The Rare Cancers Working Group (RCWG), a 36 strong multi-stakeholder partnership, founded in 2008 and coordinated by the European Society for Medical Oncology (ESMO), brings together scientific societies, patient and research organizations, healthcare and education providers, and the industry. The RCWG steering committee consists of 5 elected members representing their related stakeholder group and not an individual speciality and/or cancer type. 

Our Steering Committee

• RCWG Chair: Paolo Casali, European Society for Medical Oncology (ESMO)/Fondazione IRCCS Istituto Nazionale dei Tumori 
• Patient Group: Ariane Weinman, The European Organisation for Rare Diseases (EURORDIS)
• Educational providers: Alexandru Eniu, European School of Oncology (ESO)
• Research groups: Denis Lacombe, European Organisation for Research and Treatment of Cancer (EORTC)
• Scientific societies and healthcare providers: Umberto Ricardi, European Society Radiation Oncology (ESTRO) 
• Industry: Ivana Cattaneo, Novartis 

Our Governance Principles

1. The Rare Cancers Working Group is not a registered organisation or legal entity but an informal European multi-stakeholder partnership initiative composed of independent national and international organisations, societies, groups, networks, institutions and companies. 
2. The Rare Cancers Working Group 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 align with the overarching goals of the Rare Cancers Working Group  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, etc.) are based on majority-voting system 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 European Society for Medical Oncology (ESMO) leads the initiative, runs its Secretariat and serves as the partnership’s fiscal agent. The ESMO Management Team is responsible for day to day activities, administrative decisions, fundraising and budget preparation. 
6. The cooperating organisations are all represented and work together as equal partners. Moreover, a Steering Committee provides guidance, and oversees the overall scope of the initiative. 
7. Partnership decisions require a majority of two-thirds of the members of the Partnership Council. Each partner has one vote. 
8. Decisions can be taken either face-to-face at the annual partnership meetings, or by email. Meeting agendas are drafted by the Secretariat and circulated to all partners two weeks prior to the meeting for review, comments and approval. 
9. Progress reports are prepared by the Secretariat and circulated to all partners at least on a bi-annual basis. 
10. It is not foreseen that individual partners, groups of partners, or bodies 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. 
11. 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. 
12. There are no governance-related privileges foreseen for founding partners. 

The RCWG’s values are a set of overarching principles which guide its development by ensuring integrity, commitment, accountability and excellence form an integral part of our work and lives. Over the past years, RCE has successfully stood by five major governance principles:  

• Comprehensiveness 
• Working together in partnership 
• Equal Say 
• Transparency 
• Independence 

The RCWG recognises the value of ethical behaviour and the partners work on a collaborative and transparent relationship among stakeholder organisations to raise awareness about rare cancers’ challenges toward policy makers as well as to identify and promote appropriate solutions and exchange best practice.