Opportunities To Influence The Work Of A Potential New European Rare Lung Condition Network


If you are affected by lung complications of Dyskeratosis congenita, this is your chance to contribute to a European initiative.

ELF is supporting healthcare professionals and patient partners to put together an application for funding for a European Reference Network on rare lung conditions (ERN-LUNG).

The network will join together medical experts and specialist centres across Europe to share knowledge and resources for patient-centred research and care of rare and complex lung conditions.

ERN-LUNG wants to ensure that patients are at the heart of the network and that patient views about it are heard via:

An online survey for people with rare lung conditions and their caregivers – to find out what patients and caregivers think the network’s aims should be and what services all people with rare lung conditions should be able to access. The survey takes 10-15 minutes to complete, and is open until Friday 29 April 2016.

Complete the online survey or share the link with anyone you know who might be interested. For more information, visit their website here.