Emergency Preparation

What to organize ahead of time

Emergency preparation starts with current information rather than a generic treatment recipe. Ask the care team which clinical summary, medicine list, device information, advance-care documents, and specialist contacts should travel with the person.

Record practical support needs such as ventilation equipment, mobility and transfer assistance, positioning, communication, and accessibility. The people who use the plan should know where the reviewed version is stored and how updates are shared.

Keep clinical instructions clinician-written

FKRP presentations and coexisting conditions vary. A public page cannot safely choose tests, thresholds, fluids, fasting instructions, or medicine changes for an individual. Those details belong in a plan written or reviewed by the appropriate neuromuscular, cardiac, respiratory, anesthesia, primary-care, or emergency professionals.

Ask the reviewing clinician to date the plan and state which parts should be followed by emergency teams. When the plan changes, replace outdated printed copies rather than leaving several versions in circulation.

Use the blank emergency summary

The printable emergency summary provides blank space for diagnosis, allergies, medicines, cardiac and respiratory information, devices, ventilation, mobility and transfer needs, contacts, and clinician-written instructions. It contains no default clinical rules and stores no health information online.

Separate medical planning from disaster logistics

Disaster-preparation resources can help with evacuation, power, equipment, and recovery planning. They do not replace person-specific emergency medical instructions. Use each resource for the problem it actually covers.