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  • About Rare Cancers
    • Definition of Rare Cancers
    • "Families" and List of Rare Cancers
    • The Burden and the Challenges of Rare Cancers
    • The Added Value of Research on Rare Cancers
  • About the Campaign - Objectives
  • Call to Action
    • Full text
    • Signatories
  • Political Recommendations
  • EU initiatives
  • How to get involved
  • News
    • 24 May 2013: International clinical trials setting for rare cancers: organisational and regulatory constraints—the EORTC perspective
    • 21 November 2012: Joint Statement on EU Clinical Trials Regulation
    • 3 October 2012: Survey Open: Access to Rare Cancer Care in the EU – Have Your Say!
    • 20 July 2012: International survey on Pathology in Rare Cancers launched
    • 12 June 2012: U.S. NCI issues guidance for deliberations on rare cancer trial closures
    • 4 June 2012: Rare cancer research project announces world’s largest release of human cancer genome data
    • 2 April 2012: Cancer Cell Line Encyclopedia may help to improve rare cancer research
    • 27 March 2012: European Alliance for Personalised Medicine calls for early access to personalised medicine
    • 12 March 2012: ESMO Conference on Sarcoma and GIST: Doctors lack awareness of rare forgotten cancers
    • 21 February 2012: European conference explores ways to improve clinical research on rare cancers
    • 15 February 2012: International Childhood Cancer Day: Calls for policy changes
    • 24 November 2011: International Rare Cancers Initiative: EORTC – UK – US Global Collaboration
    • 16 November 2011: Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases adopted by EUCERD
    • 10 November 2011: EU consultation to improve recognition of cross-border prescriptions
    • 24 September 2011: Rare Cancers Europe: New name and new action
    • 24 September 2011: European Multidisciplinary Cancer Congress highlights challenges posed by rare cancers
    • 12 July 2011: EP Workshop on Rare Cancers: The Added Value of Closer Cooperation
    • 20 May 2011: European Platform for Rare Disease Registries
    • 31 March 2011: EurocanPlatform for cross border cancer research launched
    • 22 March 2011: EU Register of Clinical Trials launched Online
    • 15 March 2011: European childhood cancer research in danger
    • 28 February 2011: Rare Disease Day – Focus on Health Inequalities
    • 15 February 2011: MEPs remember Children with Cancer
    • 12 January 2011: EP Meeting: Challenges of Rare Cancers
    • 27 November 2010: Open Letter concerning 2011 UN Summit on Non-Communicable Diseases
    • 9 October 2010: ESMO Rare Cancers Press Briefing
    • 9 October 2010: ESMO 2010 Rare Cancers Press Briefing Videos
    • 7 October 2010: Underestimated Obstacles to Rare Cancer Care
    • 5 October 2010: EP Meeting: Orphan Drugs for Rare Cancers
    • 13 September 2010: European Action Against Rare Cancers Secretariat
    • 9 December 2009: EU Committee of Experts on Rare Diseases
    • 24 June 2009: Launch of European Action Against Rare Cancers
    • 10 December 2008: Rare cancers are common; optimal care is not
  • Rare Cancers Conference 2012
  • Surveys
  • Events
  • Cooperating organisations
    • Campaign Organisation Committee
    • Governance principles
    • Video testimonials from Cooperating organisations
    • Quotes from the Cooperating organisations
  • Corporate supporters
  • Links
    • General Cancer Patient Support Organisations and Sites
    • Rare Cancer Type-Specific Patient Support Organisations and Sites
    • General Professional Organisations, Research Organisations and Sites
    • Cancer Type-Specific Professional Organisations, Research Initiatives and Sites
    • Clinical Practice Guidelines for Professionals and Guides for Patients
  • Campaign materials
  • Contact us

Campaign Organisation Committee

Paolo Casali, European Society for Medical Oncology (ESMO) / Fondazione IRCCS Istituto Nazionale dei Tumori

Flaminia Macchia, European Organisation for Rare Diseases (EURORDIS)

Jana Pelouchová, European Cancer Patient Coalition (ECPC)

Jean-Yves Blay, Conticanet / European Organisation for Research and Treatment of Cancer (EORTC) / World Sarcoma Network (WSN)

Angelo Paolo Dei Tos, EuroBoNeT / European Society of Pathology (ESP)

Wendy Yared, Association of European Cancer Leagues (ECL)

Sandy Craine, Chronic Myeloid Leukaemia Support Group

Kathy Oliver, International Brain Tumour Alliance (IBTA) / Cancer 52

Ségolène Aymé, Orphanet

Jan Geissler, CML Advocates Network

Markus Wartenberg, Sarcoma Patients EuroNet Association (SPAEN) / International Kidney Cancer Coalition (IKCC)

Jayne Bressington, GIST Support UK & PAWS-GIST

Debbie De Boltz, Rarer Cancers Foundation (RCF)

Hans Keulen, Chordoma Foundation

Gordon McVie, European Institute of Oncology (IEO) / ecancer

Edel Fitzgerald, European Society for Paediatric Oncology (SIOP Europe)

Sergio Sandrucci, European Society of Surgical Oncology (ESSO)

Enrique Grande, Grupo Español de Tumores Huérfanos e Infrecuentes (GETHI)

Nicholas Pavlidis, European School of Oncology (ESO)

Anita Margulies, European Oncology Nursing Society (EONS)

Iris Bassi, European LAM Federation

Peter Riegman, European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB)

Maria Fagerquist, Novartis Oncology

Michael Koehler, Pfizer Oncology

Antoni Gelonch Viladegut, Sanofi

Moira Howie, Lilly

200. Call to Action

© Rare Cancers Europe 2012. All rights reserved.
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