Emergency Preparedness

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.


Emergency Information Cards

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.

Portable Health Record or Personal Health Record (PHR) for Children or Adults with Genetic Conditions

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.

Metabolic Precautions and ER Recommendations including a Sample Emergency Letter for Families

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. 

Emergency Identification Form

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. 

Emergency Preparedness for Children with Special Healthcare Needs

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. 

Prepare for Emergencies Now: Information for People with Disabilities

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.  

Other Resources

Have you heard of the Regional Genetics Collaboratives? Visit their sites (listed below) for more information and resources specific to genetic conditions and services. For example, the SouthEast Regional Genetics Collaborative (SERC) has developed and published a strategic plan for individuals with genetic conditions and their families, genetic centers and labs. This publication has tangible first steps which families can consider for their own emergency preparedness. The SERC Emergency Preparedness webpage has other resources which are regularly updated as this ongoing project progresses.

Not from the Southeast Region? Find resources and services information specific to your region: 

  • Northeast (Connecticut, Rhode Island, Massachusetts, New Hampshire, Maine, Vermont)
  • New York Mid-Atlantic (Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia
  • Southeast (Alabama, Georgia, Florida, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee, Virgin Islands)
  • Region 4 Midwest (Kentucky, Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin)
  • Heartland (Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota)
  • Mountain States (Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah, Wyoming)
  • Western States (Alaska, California, Hawaii, Idaho, Oregon, Washington, Guam)

National Resources