Washington, DC — March 2, 2021 More than 25 million Americans living with rare diseases face many challenges, including finding information about their condition, accessing quality health care, and paying for treatments. With help from the National Organization for Rare Disorders (NORD®), the rare community is assisted with access, resources and advocacy. But what happens when someone with a rare disease has an accident or medical emergency? Today, NORD and MedicAlert Foundation announced a new program to help provide protection to rare disease patients in emergency situations.
Given the nature of rare diseases, first responders or emergency personnel may not be aware of the individual’s condition, or familiar with their treatment. If the patient is unable to speak or otherwise unable to explain their disorder, who will advocate for them?
To address this critical gap, NORD has teamed up with MedicAlert Foundation. Since 1956, MedicAlert has been the leader in medical identification systems and currently provides two crucial components to protect those living with chronic medical conditions: a wearable medical ID, and a detailed health record that can be relayed to first responders in an emergency. Through the new program, NORD and MedicAlert Foundation will provide MedicAlert IDs and memberships to eligible rare disease patients.
“NORD’s ultimate goal is to improve the lives of individuals and families affected by rare diseases,” said Jill Pollander, RN, MSN, NORD’s Director of Patient Services. “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.”
The nonprofits will make MedicAlert products and services available to those living with rare diseases in two ways. As part of NORD’s RareCare® patient assistance program, patients and families facing financial hardship can apply for a MedicAlert membership, which will be jointly funded by NORD and MedicAlert Foundation.
Additionally, when someone purchases a new MedicAlert membership using the tracking code NORD, MedicAlert will donate 20% of the membership fees to NORD to further their mission of providing care and resources for those living with rare disorders. Those interested in supporting NORD in this way can learn more at medicalert.org/nord.
“For 65 years MedicAlert Foundation has been saving and protecting lives for anyone living with a chronic medical condition – including those with rare diseases,” says Josefina Jervis, President & CEO of MedicAlert Foundation. “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. When patients can’t speak for themselves, MedicAlert can be their voice.”
MedicAlert operates an emergency response center that is available 24 hours a day, seven days a week to relay a patient’s emergency health profile to first responders. That, along with enabling patients to keep a detailed online emergency health profile, including medical conditions, medications, treatment protocols and emergency contacts, can bring comfort to many rare patients and families.
“Patients and families living with rare diseases already have enough on their plates,” added NORD’s Pollander. “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.”
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ABOUT THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
ABOUT MEDICALERT FOUNDATION
MedicAlert Foundation is a nonprofit, 501(c)(3) organization, and the creator of the original medical ID. The MedicAlert emblem is globally recognized by first responders and emergency personnel, who connect with MedicAlert’s 24/7 Emergency Response Team for a member’s full health record. Since 1956, MedicAlert has been helping those with chronic medical conditions receive fast and accurate emergency care. MedicAlert serves millions of members in the U.S. and through 10 global affiliates. For more information, visit medicalert.org.
CONTACT:
NORD:
Laura Mullen, 203-304-7258, lmullen@rarediseases.org
MedicAlert Foundation:
Julie Hylton, 214-244-3220, jhylton@medicalert.org