LPLD Alliance was founded in July 2015 and was registered with the Charity Commission (1165873) in March 2016.
Until 2012 there was very little information about LPLD/FCS other than academic documents written from a medical perspective reporting on the (few) clinical trials that had taken place. The patient experience as described in the literature was about patients, not from patients. It didn’t fully capture the experience of living with LPLD/FCS. In 2012 the founder of LPLD Alliance authored the first information sheets written about the condition by a patient which were uploaded onto the HEART UK website.
Also in 2012 the founder of LPLD Alliance created the first online community for people with the condition LPLD Community on RareConnect, part of EURORDIS, the European Organisation for Rare Diseases. The community’s forum is human-translated into 7 European languages and is moderated by patients and by the communities manager at RareConnect. This created the first ever opportunity for patients to connect with each other from anywhere in the world and be able to find others like themselves.
LPLD Alliance is the next step in working to meet the needs of patients with LPLD or one of the related conditions.