HEAT Kit

Free Resource

Your voice
in the room —
the HEAT Kit™

"I was confident, outspoken and strong for all of my life — until I found myself sick and in need of emergency care."

Hospital and emergency visits are overwhelming when you're sick. Our free HEAT Kit™ takes away some of the anxiety so you can focus on getting the care you need.

Order Your Free Kit™ Learn why you need one
100% Free, always
5 Diseases served
48 States reached

Explore the Kit

Everything you need to know about your HEAT Kit™

1
Why you need it
2
What's inside
3
How to complete it

Why you need a HEAT Kit™

Even the most calm, collected and organized person can find themselves overwhelmed without critical information during a health emergency, new doctor visit, or hospitalization.

This kit ensures you don't have to start fresh each time — and that you're prepared for emergencies. You deserve to position yourself and your loved ones to receive the best care possible.

HEAT Kit

What's inside your HEAT Kit™

Kits arrive on a carabiner so you can hang it near your door for easy access. The ring lets you remove and add pages as needed. Every kit includes:

  • Disease summary page for healthcare providers (NIH source)
  • Medical alert & emergency summary page
  • Medication & allergy lists
  • Provider contact list
  • Immunocompromised status notification
  • Hospitalization checklist & packing list
  • Temporary Power of Attorney
  • Disease-specific pages (EGPA, GPA, MPA, Myasthenia Gravis, IgG4-RD, HES)
HEAT Kit Components

How to complete your kit

A walkthrough video will guide you page by page through your kit. Some pages are self-explanatory — others are designed for specific purposes and are best completed with the video.

The walkthrough uses the Myasthenia Gravis kit but applies to all disease kits. Personalize it with your diagnosis, medications, and care team info, and bring it to every visit.

Designed for patients

Built by patients.
For patients.

This kit is for the person with the disease and their whole care system — loved ones, care partners, and family members. Prepare it in advance and bring it to every hospital visit, ER trip, or specialist appointment.

Reduces anxiety at ER & hospital visits
Helps providers understand your condition quickly
Useful at any doctor visit, not just emergencies
Designed for the whole care system — not just the patient
100% free, always

Get Yours Today

Order Your Free
HEAT Kit™

Fill out the form and we'll send your kit at no cost. One kit per patient. If you live outside the US, we'll send a PDF version due to shipping costs.

100% Free, always
48 States reached
20 Countries reached
Name of the person with the disease
Name of spouse, care partner, family or friend
Country
Please note: if you live outside of the US, due to the cost of international shipping, we will be sending you a PDF to print the HEAT Kit along with all of the instructions.
Because of cost, we are only able to provide one kit per patient. Please confirm that this is your first and only HEAT Kit order.
Got Questions?

Frequently Asked Questions

Everything you need to know about your HEAT Kit™.

Yes in fact we have had two rheumatologists (one from Cleveland Clinic and the other formerly with Mayo Clinic), one ER resident, one ER attending physician and a nurse review and or test the kit with us. The comments have been “this is very helpful, emergency doctors do not get training in all of the rare diseases”, “this will help the hospitals a lot”, “I don’t see anything that seems to be missing or needs to be changed.”

Unfortunately no. We needed this to be small enough to be portable and it has a large amount of information it captures. If it was larger it would be cumbersome to carry in the car and manipulate. We have tested various sizes. Also, keep in mind, while you are filling it out – the audience is actually the health care providers. They are very used to small print. In testing with physicians we found the doctors read it easily and were able to integrate the information and reflect it back in conversation.

We encourage you to use erasable ink or a pencil. If you cannot use that, you can try white out. If that does not work or you need another form because something changed, just send us a message. We will do our best to get you a replacement page.

We are a very small nonprofit with a focused mission – to improve access to medical care, particularly emergency and hospital care for people with rare diseases. We produce and distribute kits as they are funded. If you have a disease you would like us to explore, please feel free to send us a message.

We have two small baggies in the pouch. While you can use it for anything, we identified that it was important to have your medications with you while you wait at the emergency room. You will be limited in what you can bring into the hospital, but while waiting in the waiting room you may find you are there long enough you need regular meds. It is a good idea to mention to the reception that you are taking regular medications in case they need you to wait.

These kits have to go with you every time you go to the ER or hospital. They have to be tough enough to withstand multiple visits. Printing these at home will not allow for hardy enough paper or ink to serve the purpose.

Because of cost and limits of funding, in general we only mail within the US. We can send you a PDF, recognizing, as mentioned above, that it is not ideal. If you really would like a kit and you live outside of the US you can reach out to us and perhaps make a donation enabling us to fund the postage.

We welcome and appreciate any and all assistance getting the word out about these free kits. You can find us on Facebook, Linked In and share your experience and encourage others to get a kit. Use #HeatKit. Also, please feel free to send us a note, or your story – include a picture if you want. If you permit it, we will share it on our social media and with funders – they like to know they have made a difference!

This kit will continue to be developed as needed. We have a couple changes in the pipeline, though they are working their way through the medical advisors, so it might be a bit. Rest assured, we have your information and if there are additions to the kit we will mail you the additional materials. Actually, that is why we chose to assemble it as we did, so it can be added to and changed easily with minimal cost!

Of course! We are grateful for the generous donors who help make our work possible. Please click the donate button at the top of the website. If you have any issues please email us at info@eosinophilraredisease.org

Have More Questions? Contact Us
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