Quotes from the Cooperating Organisations

Campaign Organisation Committee


“In 2010, cancer will overtake cardiovascular disease as the major cause of death worldwide. As many as one-fifth of all cancer cases consist of rare cancers. So, ironically rare cancers are in fact, not so ‘rare’. Today, even frequent cancers are divided more and more into subgroups which require the administration of different therapies, including the latest advances in molecular targeted treatments. Thus, European policy-makers face a formidable challenge when addressing issues related to a disease which spans from common cancer types down to the rarest forms of cancer. ‘Rare Cancers Europe’ is a united collaborative effort initiated by the European Society for Medical Oncology together with key European stakeholders in both rare diseases and rare cancers. I am convinced that our ‘call to action’ signature campaign is valuable to the entire European community because it helps to identify the challenges faced by patients with rare cancers and outlines concrete, integrated and sustainable solutions to improve research, diagnosis and treatment. I encourage everyone who supports the rights of patients to the best treatment available to join us by signing the ‘call to action against rare cancers’ on our homepage: www.rarecancerseurope.org.” ( watch video)

Paolo Casali, European Society for Medical Oncology (ESMO)


“Rare cancer patients and other rare disease patients face common challenges that can only be overcome through meaningful cooperation between different stakeholders. In this context, patients’ participation in awareness raising campaigns is an essential element to help disseminating knowledge and improving access to high quality treatments.”

Flaminia Macchia, European Organisation for Rare Diseases (Eurordis)


“The standard approach used to treat common cancers does not work for rare, less common cancers. Support for innovative research and treatment of rarer cancers is, by necessity, crucial if we are to be effective in using the knowledge gained over the last decade and realise the potential for cure or, at the very least, render cancer a chronic condition.” ( watch video)

Sandy Craine, CML Support Group


“Conticanet has amongst its goals to improve the organisation and efficacy of clinical, translational, and basic research. We participate in Rare Cancers Europe because attracting patients and physicians/heath care provider attention is crucial for better and earlier recognition and diagnosis of rare tumours – which are altogether not so rare. Increased awareness can lead to better management of patients, increased funding of rare cancer research, and facilitation of patient care in particular in regard to cross-border travelling to reference centres when needed.”( watch video)

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


“We are committed with our fellow stakeholders in raising awareness for issues faced by those affected by rare cancers. We hope our efforts can indeed “make a difference in cancer control” and improve the current policy climate, including encouraging active dialogues among decision-makers to identify and address gaps related to rare cancer care and treatment in Europe.”

Wendy Yared, Association of European Cancer Leagues (ECL)


“Out of the shadows on the cancer map - this is what we want to see happen to rare cancers. This initiative not only throws light on existing barriers to treatment and care, but recommends crucial improvements. The International Brain Tumour Alliance is proud to support this campaign.”( watch video)

Kathy Oliver, International Brain Tumour Alliance (IBTA)


“Rare cancers are an important aspect of rare diseases in general, which Orphanet attempts to document for the benefit of the whole community. This field certainly would benefit from the dissemination of good practice guidelines, which could make a significant difference for patients, in addition to collaboration between research teams and the organisation of expert health care pathways. Supporting the ESMO campaign is within the scope of Orphanet’s mission.”

Ségolène Aymé, Orphanet


“The European Institute of Oncology, IEO, being a comprehensive cancer centre, is a reference centre for patients with rare types of cancer and for rare forms of presentation of more common cancers. A multidisciplinary approach of specific task forces is provided for common and rare types of malignant diseases. For example, this is the case for more than 200 patients with newly diagnosed neuroendocrine tumours per year. Such an approach guarantees the best chance for improving patient care through proper discussion of treatment strategies. Very importantly, it allows new drugs development for such diseases. At this regards, as a member of Italian Drug Regulatory Agency, I make all efforts to guarantee the access to proper treatments for all patients with rare diseases in general and with rare cancers in particular.”

Filippo de Braud, European Institute of Oncology (IEO)


“Throughout Europe, 1 in 3 citizens will be diagnosed with cancer during their lifetime. A considerable proportion of these will suffer from a rare cancer. There are some specific challenges for patients with rare cancers, like delayed diagnosis, lack of referral to centers of expertise, or the lack of research on therapies tackling rare conditions. This initiative is so important to draw some attention on these specific issues.”( watch video)

Jan Geissler, Co-founder of the CML Advocates Network


“Improved cooperation among all stakeholder groups, as well as recognition of how each can contribute, is a precondition for attaining the highest possible standards of care in rare cancers across Europe. Novartis Oncology is proud to take part in this process.”

Andras Fehervary, Novartis Oncology