Rare Cancers
Chair: Winette van der Graaf

As part of its mission, EORTC works to address how to better care for patients with rare and ultra-rare cancers, recognising the challenges this patient population faces in accessing new drugs and treatments rarely registered for them. This is an essential priority in our agenda in our attempt to solve this unmet need.

Our organisation has an outstanding track record of rare cancer clinical trials that have transformed the lives of patients & their families and have optimised the use of treatments in healthcare settings. With this task force, we intend to deepen our commitment.

Discover the Task Force: Interview with Winette van der Graaf

The primary objectives of the Rare Cancers Task Force are to address the challenges faced by patients with rare cancers, including limited access to clinical trials, new drugs, and effective treatments. The task force aims to:

Establish a European platform for rare cancer clinical research, leveraging existing infrastructures and partnerships to better understand the biology of these rare entities, the current treatment and outcomes of patients and to enable interventional research.

  • Enhance multidisciplinary collaboration and integrated research efforts;
  • Develop innovative methodologies and policies for more efficient clinical trial designs and treatment access;
  • Improve access to clinical trials and therapeutic advancements for rare cancers

The task force brings together a broad range of stakeholders, including:

  • Oncologists, researchers, specialised in rare cancers;
  • Patient advocacy groups to ensure patient-centric approaches;
  • Regulatory experts, pharma partners, and health technology assessment bodies to streamline drug approval and access;
  • Collaborators from European networks such as EURACAN (Expert Care for Rare Adult Solid Cancers) and EORTC, building on successful projects like ARCAGEN.
To achieve these objectives, the task force focuses on:

  • Building networks: Strengthening current and develop new collaborations across academic institutions, pharmaceutical companies, and patient organisations;
  • Innovative research: Utilising platforms like SPECTA for clinical studies to collect data and generate hypotheses for clinical trials, with a focus on genomic profiling and molecular diagnostics;
  • Methodological innovation: Advancing clinical trial designs tailored to rare cancers, employing cutting-edge data science, AI, and federated models for research;
  • Policy advocacy: Working with regulators, payers, and policymakers to address the unique needs of patients with rare cancers, promoting regulatory solutions and improved access to treatments;
  • Data integration: Creating seamless data-sharing solutions to enhance research and improve clinical decision-making.
By leveraging existing resources and forging new collaborations,the task force aims to improve the care and treatment of patients with rare cancers across Europe.