Center for Rare Tumors

One in five cancer patients in the Netherlands (20%) has a rare tumor type. This affects around 20,000 new patients every year. If less than 1021 new patients are diagnosed with a particular tumor type every year, we consider it a rare tumor. More than 100,000 people in the Netherlands are currently dealing with a rare type of cancer or did in the past.

Research shows that the survival rates of patients with rare cancer types are much lower on average than those of patients with common tumor types. The gap continuously gets bigger because rare cancer types are often not discovered on time, which leads to later diagnoses. Chances of successful treatment and survival are much lower as a result. Rare cancer types also see much less research, which means that there are very few new treatment options or prescription drugs for these patients.

National expert centers in rare tumors

To combat these issues, several expert centers have been established throughout the Netherlands. This is a first step towards better, integrated care for patients with rare tumor types. The Netherlands Cancer Institute houses ten of these expert centers – we are experts in particular cancer types, or groups of rare types, and will be the only, or one of the few hospitals in the country to offer treatment for these particular tumor types.

Winan van Houdt
Being granted the status of expert center for rare tumors is a great step towards better, integral care for patients with rare conditions.
Winan van Houdt Surgeon

ERN EURACAN: EUropean RAre CANcers – reference network for rare adult cancers (solid tumors)

Besides the national recognition, we participate in the European reference network for rare adult cancers. European reference networks (ERNs) are virtual networks involving healthcare providers across Europe.
They aim to tackle complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources.

  • Sarcoma Expertise Centers
  • Expert center for rare urological diseases
  • Expert Center of Neuroendocriene carcinomas
  • Center of rare head and neck tumors
  • Expert Center of rare thoracic tumours
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