The European Society for Medical Oncology (ESMO) is therefore launching Rare Cancers Asia (RCA), a multi-stakeholder partnership that will build on the success of the existing Rare Cancers Europe (RCE) initiative.

Rare cancers inherently make it difficult to collect data, build clinical expertise and treat affected patients – challenges which are best addressed through collaboration in international networks. Led by ESMO but founded jointly with actors ranging from patient advocacy groups to research institutions and industry partners across Asia-Pacific, it will focus on three key areas: education, research and epidemiology.

By collaborating and sharing experiences with Rare Cancers Europe, its 10-year-old European counterpart, Rare Cancers Asia will benefit from the resources offered by European Reference Networks on rare cancers such as EURACAN.

The first project planned under the auspices of RCA is the creation of a clinical-pathologic web sarcoma platform for sharing clinical cases between Asian sarcoma reference centres and the institutions which make up EURACAN’s sarcoma domain. Its aim will be to harmonise diagnosis and clinical practices in this group of rare cancers, where strategic medical decisions at the beginning of the patient pathway are crucial to making a difference in patient’s outcome.

Two further collaborative projects are slated to begin immediately with the creation of RCA, including an epidemiological study to estimate the incidence of rare cancers and compare it across selected Asian countries, as well as between Asia and Europe. Working with available population-based registries in the region, the objective will be to build on the experience of RARECAREnet, the European information network on rare cancers, and develop “RARECAREnet-Asia” to improve the quality of data on these diseases in Asia-Pacific.

Additionally, an epidemiological and translational research project on nasopharyngeal cancer (NPC) will be launched to study the striking epidemiological characteristics of this disease and improve treatment options for it based on tumour biology. While new cases of NPC are diagnosed in fewer than one in 105 people at risk for the disease annually in most areas including Europe, the disease occurs at a much higher incidence in southeast Asia. There are also differences in survival between high and low-incidence regions.

Paolo G. Casali, co-founder of both ESMO-led rare cancers initiatives and moderator of the special session at the upcoming Congress in Singapore, commented on the launch of RCA: “Rare Cancers Asia aims to become the preferred platform for discussing and proposing solutions to the many challenges faced by rare cancer patients, physicians, researchers, industry and other stakeholders in the Asia-Pacific region. Designed to work in partnership with Rare Cancers Europe, RCA will build bridges between Asia and Europe, and be of help to both rare cancer patient communities,”

“By furthering our global understanding of these diseases and allowing best practices to be shared more widely across both regions, Rare Cancers Asia will ultimately contribute to improving care for patients who urgently need it,” Casali added.