“…DNA testing should only be carried out by accredited laboratories that can screen for mutations in all the major genes of interest [8,78,86]. Adequate patient assessment requires access to cardiac and imaging facilities, including treadmill testing, myocardial perfusion scanning and ultrasonography; close links with cardiology are essential [7,8,54,203]. Collaboration with a transfusion medicine or dialysis unit is important for managing apheresis [8,152,153,155].…”