The CLF is Pursuing a National Emergency Treatment Database for 30 million Americans

With over 30 million Americans living with a rare disease, it’s natural to wonder what Emergency Medical Services (EMS) look like for the 10% of the population affected.

For patients like Leonora, it doesn’t look good. A lack of consistent EMS education and coverage for her condition, Secondary Adrenal Insufficiency, means that in a medical crisis, trained EMS professionals might be unable to administer the life-saving medications she needs to survive a medical crisis. A vial of Solucortef costs approximately $8-$10 with a 5 year shelf life and the medical is easy to inject.

Sadly, Adrenal Insufficient patients are not the only rare disease population to need specific emergency treatment protocols. While rare disease patients can take all of the necessary steps to identify themselves for emergency medical treatment – like wearing medic alert bracelets, flagging their file with local EMS/hospitals, carrying medications, and identifying their vehicles – a lack of continuity in recognizing and enforcing these protocols means that rare disease patients are often prisoners in their own counties.

An opt-in National Emergency Treatment Database for Rare Disease Patients would prevent unnecessary medical delays and treatment errors while providing patients with national coverage of their protocols, regardless of where they travel.

Join the Cambria Lord Foundation as we kick-off our #Wear4Rare365 campaign to raise awareness for the rare disease community and the need for a National Emergency Treatment Database.