Rare Disease Report

Emergency Packs for Rare Disease Patients

OCTOBER 26, 2017
Darlene Sheldon

Darlene Sheldon of Danny's Dose Alliance sat down with Rare Disease Report at the National Organization for Rare Disorders (NORD) Rare Disease & Breakthrough Summit in Washington D.C. to discuss the advocacy group’s initiative to provide an 'emergency pack' to emergency medical technicians so that they’re aware of the best procedure to treat special individuals in an emergency.

As Darlene explains in this video, the initiative is to change the current EMS and ER protocols so that paramedics and doctors are allowed to use a patient's emergency medical orders for prompt and proper treatment.

Currently, due to liability issues and fear of the unknown, most emergency protocols prohibit emergency staff from administering patient-carried medications.

The problem is that for a person with a rare disease, the standard emergency protocols may not be applicable for them and they may need special medications and/or instructions for the emergency staff to administer. To that end, the concept of an ‘emergency pack’ was developed to provide emergency staff with the instructions and medications medical professionals may need to treat a rare patient in an emergency.

The emergency pack is attached to a child’s car seat with a special MediAlert tag to let emergency staff know it’s there. Inside are specific instructions from the child’s physician in case of an emergency. Also in the pack will be any medication needed in an emergency that is specific for the rare disease patient. 

As Sheldon explains in this video, this common sense approach to the problem took about 2 years to develop and the team at Danny’s Dose Alliance is currently educating state legislators, insurers, and medical emergency panels on this method to help the patient and the emergency staff in those rare situations where standard protocol is inappropriate.

For more information, visit dannydose.com

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