In 2012, the project RARECARENET (Information Network on Rare Cancers)[46], which built upon some of previous activities of the Project RARECARE (Surveillance of Rare Cancers in Europe)[47] which provided estimations for incidence, survival, prevalence and mortality for all rare cancers. The project aims (i) to provide updated indicators of rare cancer burden, (ii) to collect and disseminate information on the health care pathways for rare cancers, (iii) to identify the criteria for centres of expertise for rare cancers, (iv) to produce and disseminate information on diagnosis and management of rare cancers, (v) to develop a clinical database on very rare cancers, ...[+++](vi) to provide new knowledge on these diseases and their clinical management, and (vii) to develop and disseminate information for patients including a list of patients’ associations dedicated to rare cancers. In 2013, the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-NeT), to support the provision of healthcare to children and young people with cancer in a Member State other than the Member State of affiliation, when the expertise with certain cancer conditions is rare and case volume low, contributing to provide cross-border best care to rare childhood cancer populations.

Abundance category (Cat.): see explanation above under ‘size’ — C = common, R = rare, V = very rare, P = present — this field should be filled in if the data are deficient (DD) and no population size estimation can be given or in addition to quantitative estimations of population size.

Category: Where quantitative data do not exist indicate whether the species is common (C), rare (R), or very rare (V).

In this case the values for population size can be left empty and the field for abundance categories can be used instead (common (C), rare (R), very rare (V), or present (P)).

Member States are free to apply in the assessment their own scaling system as long as it can be directly converted into percentage cover ranking from 0,01 % (very rare) to 100 % (complete cover).

Private members' bills very rarely get selected to be votable in the House and very rarely get passed.