NDIAG • Education • Advocacy • Support
NDI Emergency Care & Preparation
Practical preparation for families, including medical-alert cards, phone Medical ID, emergency kits, EMS information, and individualized plans.
Build an NDI emergency kit
- ☐ Diagnosis and genetic diagnosis, if known
- ☐ Nephrologist/endocrinologist contact information
- ☐ Medication names, doses, schedules, and allergies
- ☐ Individualized emergency/sick-day plan
- ☐ Recent relevant labs or baseline information, if your team recommends carrying them
- ☐ Water and approved hydration supplies
- ☐ Feeding-tube supplies if applicable
- ☐ Catheter/continence supplies if applicable
- ☐ Backup medications and supplies
- ☐ Medical-alert card
NDIF medical-alert cards
NDIF provides printable NDI/AVP-R medical-alert cards designed with input from physicians on its Scientific Review Board. Families can keep them in wallets, school files, travel bags, emergency binders, and hospital go-bags.
Get the NDIF Medical Alert Card →Ask about a CAD/911 note
Families can contact their local fire department or EMS agency and ask whether the agency offers a CAD (computer-aided dispatch) or special medical information program. Ask what information they can store, how it is accessed, and how to update it. Policies vary by locality.
Medical ID on your phone
🍎 iPhone
- Open the Health app.
- Tap your profile picture.
- Tap Medical ID.
- Tap Edit or Get Started.
- Add medical conditions, medications, allergies, and emergency contacts.
- Turn on Show When Locked.
- Review the Emergency Call/Share During Emergency Call options available on your device.
🤖 Android
- Open Settings.
- Search for Safety & emergency or Emergency information.
- Enter medical conditions, medications, allergies, and emergency contacts.
- Turn on the option that allows emergency information to be visible from the lock screen if your device offers it.
- Test the lock-screen pathway so you know what a responder will see.
Android menus vary by manufacturer and model.
What to put on the Medical ID
Include the diagnosis as written by your medical team, the words “Nephrogenic Diabetes Insipidus / AVP Resistance”, allergies, current medications and doses, emergency contacts, specialist information, and any physician-approved emergency instructions.
NDIF currently provides suggested wording and emergency guidance for its NDI/AVP-R medical-alert card. Families should review that information with their own clinicians and carry their individualized plan as appropriate.
At school, camp, travel, and appointments
Make sure caregivers know where the emergency kit and medical-alert information are stored. For children, consider copies in the school health office, backpack, caregiver bag, and travel kit.