Pan-European patient organisations
As there is no central registry for patient organisations across Europe or the globe, it is difficult to ascertain how many of them there are. It is clear though that the size and infrastructure of these bodies varies enormously and that the number of voluntary organisations is growing, with more of them representing specific diseases as well as more umbrella organisations across Europe and the world. The increase in the number of pan-European bodies reflects the desire of patient organisations to be part of larger-scale collectives and to be represented at the European level while still maintaining their own identity.
The ELF survey revealed that 87% of national and pan-European respiratory patient organisations are keen to work collaboratively at the European level to raise awareness of lung health, 80% are interested in joining the ELF network of patient organisations, 73% want to be able to participate in the ERS Congress and 52% want to work together to produce patient information. Table 1 lists the pan-European patients organisations that work with ELF.