NET Patient Foundation Attends EURACAN Conference

The 2nd EURACAN conference was held in Oxford this year.

EURACAN is the European Reference Network (ERN) for Rare Cancers. ERNs are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.

To review a patient’s diagnosis and treatment, ERN coordinators will hold a “virtual” advisory board of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. This way it is the medical knowledge and expertise that travel rather than the patients, who have the comfort of staying in their supportive home environments.

This meeting was a gathering of a stakeholder network of active EU centres involved in the management of patients with rare adult cancers. This conference aimed to bring together different branches of rare cancers, based on histological and organ of origin classifications. Participants were invited from all aspects of rare cancer management, pharma, industry, patient advocacy groups, patients and healthcare providers. We were there representing NET patients.

There are a number of challenges within rare cancers, as we know, as described by the Rare Cancer Project:

  • Lack of access to the correct diagnosis
  • Lack of scientific knowledge and understanding of the underlying biology
  • Lack of robustly developed and proven treatments
  • Lack of appropriate quality health care
  • Inequities in diagnosis, treatment and care among treating centres
  • High cost of the few existing drugs and overall care pathway

The neuroendocrine domain of the Rare Cancer ERN is striving to ensure that via the online MDT system patients from all over Europe have access to expertise. There are a number of countries within Europe that are currently not able to run specialist NET clinics and do not have access to patient information, support, treatments or even just expert knowledge. We want the ERN platform to be able to improve the inequities in diagnosis, treatment for NET patients across all of Europe.

We were also involved in discussions about whether patients should raise funds for their own treatments, alongside Jo Grey and Kathy Oliver. This session was chaired by our friend Jane Lyons from Cancer 52. Other topics on the agenda were around communication and health economics of rare cancers. This topic is so important to us in the NET community with the NICE standardised approach to cancer drug funding.

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