Everything you need.
In one place.
The Hospital Emergency Advocacy & Treatment Kit™ is a free, portable resource designed to help rare disease patients and their care partners communicate clearly with providers — at every visit, emergency or not.
From Our Community
What patients are saying
"I was recently shown a HEAT Kit from your company for Myasthenia Gravis patients. I help many of my tenants with scheduling doctor's appointments and follow ups and felt this is such a wonderful kit for them to share with their medical providers. I serve tenants with some of the Rare Diseases listed, and am wondering what other diagnosis you may have a HEAT Kits for? I think that these would be amazing to be able to show and tell with my tenants."
Myasthenia Gravis
"I have to say it has actually still been great to have the HEAT Kit while in the hospital. Monday I went in for surgery and the surgeon and anesthesiologist were in my room and told me they were going to give me some antibiotics and meds so I pulled out the contradicted med page and handed it to them. They LOVED it and were able to see right there that the meds they plan to use should be ok. Everyone knows the white little bag on my table has all my info if anyone has any questions. I wasn’t expecting it to be used while inpatient but it has."
MPA · Vasculitis
"This was really terrific, I got a lot of great tips about maximizing care with my doctor. Thank you for putting this together for us. You and your organization are such a tremendous help. There are so many things those of us with rare diseases don't even know that we don't know and there is so much value in bringing us together to share learning and best practices....and just for general support! Thank you thank you thank you"
What's Inside
HEAT Kit™ Components
Every kit arrives on a carabiner so you can hang it near your door for easy access. The ring lets you remove and add pages as needed.
Core
Disease summary for healthcare providers
Sourced from the NIH Rare Disease Center
Core
Medical alert & emergency summary page
Quick-reference for ER providers
Core
Medication & allergy lists
To be kept current by the patient
Core
Provider contact list
Including contact information for your care team
Core
Immunocompromised status notification
Alerts providers to your immune status
Core
Hospitalization checklist
Ensures you receive the attention you need if admitted
Core
Temporary Power of Attorney
Until formal release of information is completed
Core
Medical history template
Hospital, emergency, and surgical history for patient to complete
Core
Hospitalization packing list
Everything you need to bring
Vasculitis
Vasculitis treatment guidelines
Including lab and radiological vasculitis-specific tests
Vasculitis
Treatments that work for you specifically
Personalized to your diagnosis
Myasthenia Gravis
Myasthenia crisis protocols
Including contraindicated medications
HES
HES treatment guidelines
Including eosinophil monitoring and biologic therapy protocols
Each kit also includes a template for recording your provider explaining your rare disease on video, plus instructions for saving it to a USB drive for portability.
The Evidence
Research & Resources
Articles, insights, and policy updates from ERDC and the rare disease community.
