Community Survey

Please can we ask that you complete our community survey? This will provide us with really valuable data about symptoms, diagnosis and condition management for dyskeratosis congenita (DC) and telomere biology disorders (TBD) patients. We will be using this data to support our work at the TeloNet Networking Meeting on 11th November. All collated information will be[…]

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[…]