Emergency situations can happen at any time. For individuals with genetic conditions and/or special healthcare needs, having a plan can make emergency situations easier to manage and survive. Are there medications that you or your loved one depend on every day to manage symptoms and maintain health? What would you do in the event you could not access those medicines?
Something as common as a winter storm can prevent or delay individuals from accessing necessary medications and supplies. The resources below can help you and your loved ones organize your thoughts and information and be more prepared in case emergency events arise.
Two-sided information cards for 53 conditions ranging from amino acidemias, endocrine disorders, fatty acid oxidation disorders, hemoglobin, immunodeficiency disorders, lysosomal storage disorders, organic acidemias, and other disorders. The information cards can be printed and/or saved and contain information on what the disorder is/the most important thing to know about treating that condition in a crisis condition. There are also designated spots for personal identification and important names, phone numbers, and addresses. These cards were created by the New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services.
This fillable Portable Health Record (PHR) can be a great resource for children, youth or adults with adults with genetic conditions, especially in the event of an emergency. A PHR provides health care providers with up-to-date information for safe treatment and care during an emergency or travel. The PHR can be kept via hard copy using paper, online using a website, or by using a physical device such as a flash drive or DC. The PHR was created by the Western States Genetics Services Collaborative.
The United Mitochondrial Disease Foundation (UMDF) has created a sample emergency/ illness precautions letter describing procedures for medication, anesthesia, fasting, surgery, laboratory work, and IV fluids, and substrate and antioxidant therapy.
The American Academy of Pediatrics and the American College of Emergency Physicians have created an Emergency Identification Form for Children with Special Needs. Individuals and families can use this form to collect details on medical history and recommended condition management.
This resource from the Center for Children with Special Needs provides helpful tips for families for creating an emergency plan and packing an emergency supply kit.
The Federal Emergency Management Agency (FEMA) has created an informational brochure for individuals with disabilities or special medical needs to help plan and prepare for emergencies.
Not from the Southeast Region? Find resources and services information specific to your region:
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