A New Portal for Patients and Healthcare Professionals to Stay up-to-date on Available Rare Cancer Treatments

28 Feb 2020

On Rare Disease Day 2020, the multi-stakeholder initiative Rare Cancers Europe (RCE) coordinated by ESMO launched the Rare Cancer Treatment Portal Pilot: a single point of access that centralises all public information regarding the availability and reimbursement status of rare cancer treatments, the availability of compassionate use programmes and ongoing clinical trials in each of the 27 EU Member States and the UK. The Portal also contains information on the European Reference Networks’ members to enhance the accessibility of the information on their centres of excellence, available in each country per rare cancer. The current pilot includes one rare cancer per rare cancer family, i.e. PAWS-GIST (Paediatric cancers), GIST (Rare Adult Solid Cancers), and Multiple Myeloma (Adult Rare Haematological Cancers). Additional rare cancers are being included progressively.

The Portal has been designed as an educational tool to support patients and healthcare professionals to access updated information on rare cancers, and falls under RCE’s goal to enhance access to rare cancer treatments across Europe. After the successful completion of the EU Joint Action on Rare Cancers (JARC) late last year, RCE has taken over the work to support the rare cancer community towards the effective implementation of the Rare Cancer Agenda 2030.

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