For the more than 25 million Americans living with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS), medical emergencies can pose unique challenges: because these disorders are by definition rare, first responders or emergency personnel may not be aware of a person’s condition, or familiar with the appropriate treatment.
This can be especially problematic if patients’ conditions make communication difficult — for example, difficulty speaking is a symptom experienced by some people with LEMS.
As such, people with rare diseases need a way to advocate for themselves in medical emergencies.
The two nonprofits will now offer MedicAlert membership as part of NORD’s RareCare patient assistance program. Through this program, patients and families dealing with financial difficulty can apply for a MedicAlert membership, which will be funded jointly by NORD and MedicAlert.
The MedicAlert membership includes a wearable medical ID, as well as a health record that details factors like medical conditions, medications, treatment protocols, and emergency contacts, which can be sent to first responders in an emergency.
“This partnership with NORD will allow us to serve even more families in the rare disease community and help improve their outcomes in an emergency situation,” Josefina Jervis, president and CEO of the MedicAlert Foundation, said in a press release. “When patients can’t speak for themselves, MedicAlert can be their voice.”
An emergency response center run by MedicAlert is available at all hours to relay a patient’s health profile to first responders.
“Working with MedicAlert helps us provide protection and peace of mind that in an emergency, people with rare diseases can make their condition and needs known so they may receive the best possible care,” said Jill Pollander, a registered nurse and the director of patient services at NORD.
As another part of the partnership, when someone purchases a new MedicAlert membership using the tracking code “NORD,” MedicAlert will donate 20% of the membership fees to the organization. Those funds will help support NORD’s mission of providing care and resources to people living with rare diseases, the non-profits said.
“Patients and families living with rare diseases already have enough on their plates. Knowing that MedicAlert will help them communicate their unique needs in an emergency is incredibly empowering and can help those with rare diseases live more confidently,” Pollander said.
Go here for more information on NORD’s MedicAlert Assistance Program.
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