Emergency Preparedness Planning

Emergency planning is important for families, especially for individuals and/or families with a loved one with a disability, chronic medical condition, or where complex care is involved. Listed below are resources that will help you begin developing your emergency plan.

Emergency Preparedness Toolkits


Emergency Preparedness Toolkit

Included in this document are disorder-specific lists of supplies needed in case of emergency, as well as a general list of basic emergency preparedness supplies.

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Emergency Preparedness Planning Resources


Emergency Preparedness Resources for Patients and Genetic Providers

The National Coordinating Center has consolidated a list of resources developed by the various Regional Genetic Networks, Telehealth Resource Centers, the Centers for Disease Control and Prevention, and Family Voices

SERN Emergency Medical Food Access Fact Sheet

Following the onset of the COVID-19 pandemic, this fact sheet was developed to provide patients with a list of contact information from metabolic formula companies and family organizations in the metabolic community.

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