Living with a Rare Cancer - European Medical Journal

Living with a Rare Cancer

3 Mins

Rare Disease Day 2015 seeks to raise awareness of the challenges faced by patients and their families.

Lugano, 25 February 2015 – Within the “umbrella” of rare diseases, rare cancer patients confront particular problems. Most rare diseases have an identified genetic origin.  In contrast, rare cancers are mainly acquired diseases.

A rare cancer affects only 6 out of 100,000 people in all of Europe annually, that is why it is considered rare. Although some very rare cancers may only affect one person in Europe every year, four million new cases of rare cancers are diagnosed annually in Europe alone, making up 20% of all new cancer cases (1). So, taken together, rare cancers are not so uncommon at all.

But patients are not numbers. When a rare cancer is diagnosed, the lives of patients and their families change forever.

Chordoma (2) is one of the 198 types of rare cancers (3) that have been identified so far. The annual incidence of chordoma is approximately one new case per million people per year. That means that roughly 300 patients are diagnosed with chordoma each year in the United States. The incidence in Europe appears to be similar, but is unknown in other continents.

Hans Keulen, a Dutch ICT entrepreneur was diagnosed with Chordoma in 2009, after several mis diagnoses. He explains that ”when your neurologist, looking at your scan says: ‘I have never seen this before’, you know you have a problem! Luckily, soon after, I met a neurosurgeon who not only made the right diagnosis but also was wise enough to say that there were probably surgeons that could do this better … across the Atlantic! After the initial shock many rare cancer patients are unfortunately left to manage their healthcare on their own. That is how it has remained for me: searching for a cure in different countries, with doctors who do their utmost in their specialty, but who need resources and support. In many cases the patient directs his own treatment as there is still a long way to go to co-ordinate efforts between oncologists, radiologists, surgeons, etc. for the treatment of rare cancers.”

Paolo G. Casali, Chairperson of Rare Cancers Europe, also highlights the plight of rare cancer patients: “Challenges that rare cancer patients – and other rare disease patients – face have mainly to do with the difficulties of finding clinical expertise in their community. It is vital for them to get to the right institution”.

“Health systems should identify reference centres, and support them properly, especially by funding and creating appropriate networks between them.” Casali notes.

Rare Cancers Europe is advocating for expert centres for each type of rare cancer to be identified and, once they are identified, for them to be linked, forming networks that allow for exchange of information, the conducting of registries and the referral of patients. RCE is also meeting with regulatory bodies to expedite the development of new anti cancer drugs (5).

Rare Cancers Europe is pleased to be part of Rare Diseases Day 2015. As the official tag line for 2015 says, we will only beat rare diseases by working “day by day, hand in hand.”

You can help too, by signing the Rare Cancer Europe call to action:


Media contact

Rare Cancers Europe

[email protected]

Tel: 336 23 14 57 84

Rare Cancers Europe is pleased to provide spokespersons for rare cancers, please write to: [email protected]



The epidemiology of rare cancers in Europe

Chordoma Foundation:

Lists and families of Rare Cancers:

Rare Cancers Europe methodological recommendations for clinical studies in rare cancers: a European consensus position paper. Ann Oncol (2014) doi: 10.1093/annonc/mdu459


Notes to Editor

Rare Cancers Europe is hosting a meeting at the European Parliament on 24 March 2015 to ask for specific European Reference Networks to be created for the ten identified families of rare cancers. For more information, contact: [email protected]

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