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.