The rare disease community and the rare cancer community are sometimes regarded as two different worlds. However, this is far from reality. Based on the findings of a study conducted by EURORDIS amongst 60 rare cancer patient organisations, patients and their families share the same burden and face similar challenges created by the rarity of their conditions:
Rare Cancer Advocates Network
The Rare Cancer Advocates Network has been established by EURORDIS to increase the visibility of the collective work of rare cancer patient advocates for raising awareness of rare cancer patients’ challenges and needs, across all types of rare cancers and ages.
The Rare Cancer Advocates Network is made up of ePAGs across the four ERNs relevant to rare cancers (PaedCan, EURACAN, EuroBloodNet, GENTURIS) and ePAGs in other ERNs’ subnetworks covering rare tumours (e.g. ENDO ERN/ rare endocrine tumours).
Together, the Rare Cancer ePAGs forming the Rare Cancer Advocates Network, work towards the development and sustainability of European Reference Networks as well as join forces to advocate for fostering research and improving timely access to diagnosis, treatments, care and follow-up care for those affected by a rare cancer.
There are four ePAGs who represent the Network together with EURORDIS in meetings with European Institutions. Each of them represents one of the four main groups of rare cancers: