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Center for Rare Tumors

One in five people with cancer is a rare species. Rare cancers are often recognized late. As a result, people sometimes receive a diagnosis (too) late. As a result, the chance of survival for patients with a rare form of cancer is still many times smaller than for patients with a non-rare form of cancer.

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NKI national expertise center for rare tumors

Watch the video about the NKI as a national centre of expertise for rare tumours. Which tumor types do we treat? What is the benefit for the patient? And how can you be referred?

National centres of expertise for rare diseases

Little specific research is done on rare forms of cancer. As a result, few effective treatment methods and new medicines become available for these patients. At the Netherlands Cancer Institute, we use a special DNA test: the Whole Genome Sequencing (WGS) test. In this test, we read the entire DNA of the tumor. This is essential for making the correct diagnosis and for the best tailor-made treatment.

In order to be able to offer better, integrated care to patients, it is necessary to bundle knowledge about these rare cancers. The Netherlands Cancer Institute is a nationally and internationally leading centre of expertise for rare cancers with an excellent treatment team. The team provides personalized patient care and combines this with conducting groundbreaking research. In this way, we want to improve survival and quality of life for patients now and in the future.

The Netherlands Cancer Institute has twelve centres of expertise that are recognised by the Ministry of Health, Welfare and Sport/NFU. Various conditions can fall within one centre of expertise (for example, the Urology centre of expertise includes the rare tumours penile cancer and testicular cancer).

Winan New
The allocation of centres of expertise for rare diseases is a major step towards better, integrated care for patients with rare cancers.
Winan van Houdt Surgeon
Oscar Brouwer met achtergrond hal

Rare cancers: sharing expertise and national collaboration

In this video about Rare cancers, urologist Oscar Brouwer talks about how expertise is shared and about national collaboration. "Fortunately, in the case of penile cancer in the NKI, there has been considerable concentration of care for about ten years."

European recognitions

ERN EURACAN: EUropean RAre CANcers – Reference Network for Rare Solid Cancers in Adults

In addition to the Dutch recognition, we participate in the European reference networks for rare cancers in adults. European Reference Networks (ERNs) are virtual networks of healthcare providers in Europe. They have set themselves the goal of tackling complex or rare diseases and conditions that require highly specialised treatments and concentrated knowledge and resources.

  • Sarcoma Expertise Centres
  • Expert centre for rare urological diseases
  • Expert Center of Neuroendocrine Carcinomas
  • Center of Expertise for Rare Gynaecological Tumors (Center Gynaecologic Oncology Amsterdam)
  • Center of Rare Head and Neck Tumours
  • Expert Center of rare thoracic tumours

ERN EUROGEN

Sub-Thematic areas of expertise:

  • Penile carcinoma
  • Testicular carcinoma

ERN GENTURIS

Sub-thematic areas of expertise:

  • Lynch syndrome
  • Polyposis
  • Hereditary breast
  • Ovarian cancer
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videostill animatie europese referentienetwerken

Explainer video European networks

How do European Reference Networks (ERNs) work as virtual networks of healthcare professionals in Europe? What are the benefits for the patient? And what is the ambition? This animation from the European Union explains this.
Animation European reference networks rare tumors

Trial overview

In addition to being a hospital, the Netherlands Cancer Institute is also a renowned research institute in the field of cancer. Every day, 700 enthusiastic researchers are committed to better understanding how cancer develops and how we can cure it. We also carry out many scientific studies (trials) for breast cancer. If a study is suitable for you, the treating physician will discuss this with you. Some studies in rare tumors:

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