Don’t see your question answered here?
Just send us an email at info@eosinophilraredisease.org and we will get back to you.
Has a physician looked at the 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.”
The print is small, can it be larger?
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.
What if my medication changes?
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.
Why don’t you have other diseases?
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.
Why don’t you ask for donations?
We are grateful for donations, and have received some. That said, in order to partner with other nonprofits, it is important that they can be assured we are not duplicating or attempting to take funding from them. That would never be good! So, we have decided not to actively fundraise with individuals or solicit donations via mail or email. When an individual or foundation would like to, or does, make a donation we are pleased to accept it and provide the tax deduction documentation.
What is the pouch for in the back of the kit?
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.
Why don’t you just have a PDF to print?
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.
Can you send a kit to us if we live outside of the US?
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.
This kit really helped me. How can I share input and my experience and help get the word out?
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!
Do you expect changes to the kit and how will I be informed?
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!