Ciliopathy Alliance

The Ciliopathy Alliance (CA) was formed in 2010 by patient groups, patients, clinicians and scientists with a mission to improve the lives of children and adults affected by ciliopathies. The CA is a UK-registered charity with international membership. In 2012, the CA organized the first CILIA conference, which is now held biennially and is the largest cilia conference worldwide. Ciliopathy patients and patient groups are invited to attend the conference and participate in a dedicated patient involvement/engagement event. The CA will establish a PELSI (patient, ethico-legal and societal issues) Advisory Board with patients, family members and groups representing the renal ciliopathies, as well as contributing to other work packages as required