The CLF is currently pursuing a National Emergency Treatment Database for Rare Disease Patients. Such a database would help emergency physicians access treatment protocols for the 30 million Americans who live with a rare disease.
Currently, EMS protocols for rare disease patients are handled on a county-by-county, state-by-state basis. This means that there is no continuity of care when a patient travels outside of their home area. A patient can do everything right – carry their emergency meds, wear a medical id, inform their local EMS, even mark their vehicle – but that means nothing if EMS cannot treat due to a lack of protocol. This lack of protocols means delayed treatment and possible death. There is no reason an EMT should ever stand in the field with medications in hand and watch their patient die because they don’t have a piece of paper permitting them to treat the patient.