Genetic Alliance UK are currently conducting the ‘Hidden Costs’ study – a study which is testing the feasibility of researching the costs associated with managing rare conditions. The research team are looking for volunteers to test a ‘patient diary’ over a period of 2-3 weeks. The diary is designed to capture the various costs that families incur, such as the financial costs associated with travelling to medical appointments. It is important that the data collection tool is piloted with patients and families so that it can be improved and used in future research. Please contact Amy Simpson for more information or to register your interest (