To raise awareness and promote the stories of people with rare cancers, NFK's Rare Cancers Patient Platform has declared March 8 – 14 to be the Week of Rare Cancers. At Cancer Center Amsterdam, we aim to provide the best available care, increase insights via research and find solutions for all patients with cancer, including patients with rare tumors. Within Cancer Center Amsterdam, patients not only have access to the latest expertise, but they also contribute to progress. We want to learn from every patient, their data and experiences drive our scientific research. The best patient care and top scientific research often go hand in hand.  

Tumors that have an uncommon tissue of origin, an atypical clinical course, or occur at an unusual age are considered rare cancers. Although the incidence of atypical tumors is low, collectively these cancers affect about 1 in every 5 cancer patients; more than 130,000 people are living with, or have survived, a rare form of cancer in the Netherlands. Rare cancers often raise unique challenges in the clinic because specific knowledge on rare tumors is relatively limited. Accordingly, diagnosis of rare cancers can take longer and fewer treatment options have been verified. These clinical challenges are reflected by a relatively poor prognosis.

Early 2021, the Dutch Cancer Society announced two national projects to improve diagnosis and management of rare cancers. The COHERENT project received 1.6 million euro to improve the diagnosis of rare hematological cancers and promote tailored therapies for affected patients. At Amsterdam UMC, Jacqueline Cloos and Arnon Kater, members of the Expertise Center for Rare Hematologic Cancers, are involved to build a better future for these patients. The FORCE project received 3.4 million euro and is aimed at developing diagnostic tests for the early detection of rare solid cancers by analyzing biomarkers in a drop of blood. At Amsterdam UMC, Els Nieveen van Dijkum, Heinz Josef Klumpen, Anton Engelsman and Koen Dreijink are involved in this project at the Expertise Centre for Gastroenteropancreatic Neuroendocrine Tumors.

With the state-of-the-art diagnostic and treatment facilities run by expert medical professionals, and in collaboration with other care centers via regional networks, Cancer Center Amsterdam is well equipped to provide the best available care for patients with various atypical tumors. Importantly, patient participation in scientific research empowers us to learn from every patient and develop improved therapies. 

In the week of rare cancers, personal accounts will be posted daily and you can view them on Facebook, twitter, Instagram and LinkedIn (in Dutch).

Do you want to know how you can contribute to progress? Send an email to cca@amsterdamumc.nl