Before you continue, make sure you’ve read Part 1 of our interview, where we discussed the Lord family’s story and experience with rare disease, and the development of MobiMedQR. This tool, which provides QR-based access to an emergency medical record, paved the way for the rebranding and comprehensive resources of My Rare Id.

Becoming “My Rare ID”

From personal experience, Jeff and Eden knew that MobiMedQR could work in an emergency situation. In 2017, Cambria got the flu; after being taken to the ER, she collapsed in the waiting room. After Cambria was triaged, a doctor told Jeff and Eden that they wouldn’t be able to help at the time. Jeff explains:

The doctor said that he was sorry but the computer system was down. It would be an hour until the computers were up but until then, there was no way to access her protocols or medical records. Even though we were telling him that she had a rare disease and needed her meds, the doctor said he couldn’t do anything about it. We were able to pull out and scan the QR code, hand the information to the doctor, and share the protocols in Cambria’s file.

Once the doctor was able to verify the protocols and prescriptions, the nurse was able to inject Cambria with the necessary medicine to stabilize her. In fact, says Jeff, this probably saved Cambria’s life. At that point, Jeff and Eden knew that this was a tool that would be able to help people, to save lives.

Eventually, during the pandemic, the Lord family moved from Kansas City to Raleigh. Around this time, they began evaluating MobiMedQR and felt like it fell under a larger initiative called Canary Med; because of this, they wanted to rebrand as My Rare ID. Jeff shares:

Keep an eye out for Canary Med because it is going to have some really exciting offerings. Canary Med is designed to be a comprehensive suite of tools which support the patient, and My Rare ID is one of those tools. My Rare ID is an emergency health record which offers enough information to save someone’s life. I see it almost like an insurance policy. You can travel, drop your kids off at school, do whatever and know that people have access to their information and any emergency contact information.

My Rare ID is a QR-based medical card which includes:

• Photo ID
• Secure access to a read-only set of documents and a patient profile which includes active diagnoses, current medications, emergency treatment plans, and known allergies
• Patient-specific protocols (if a patient chooses to include this)
• Videos links (such as how to give injections)
• Physician information to contact (if a patient is traveling)
• Recent surgeries
• Nonprofit-validated physician resources to help doctors understand a rare disease or what is going on with a patient

The last bullet-point is especially important, Jeff explains, as it allows doctors to cut down on the time it takes to search through Google and can emphasize care by understanding what is happening in a critical time frame. He says:

Really, My Rare ID is designed as a quick tool to provide overviews, which gives you more time. Having the information there and available improves the patient-doctor experience. At the end of the day, if you can keep the doctor in the room talking to you, you’ve really doubled your face time.

Ease and Accessibility of Use

One of the helpful aspects of My Rare ID is that patients and families do not have to download an app. Jeff explains that apps can sometimes be difficult to use, particularly in remembering certain facts:

If I have an app, I have to constantly open the app. But if my kid is throwing up on me, am I going to remember everything happening at that second? Is a mom going to remember the exact time she gave her child Tylenol? We wanted to find ways to mitigate that and make it easier and more convenient to update your records on the fly. You can email records to be included in your files.

My Rare ID offers stickers, keychains, and fobs with the QR code on it. Jeff has already seen some ways in which these have positively impacted families. He shares:

I know one guy who puts the stickers on the bedroom window in case an emergency worker has to enter the premises. For another mom, she had to take her daughter to a small ER at 2am and couldn’t remember all of the medications that her daughter was taking at that moment. Having access to that information virtually is vitally important.

In the future, Jeff only hopes to expand the offers. On the Canary Med side, he hopes to get to the point where they can offer more of the full medical record. They will also offer more educational tools and resources around chronic illness and rare disease. In terms of My Rare ID, the tool will be piloted through a number of children’s hospitals. My Rare ID has also partnered with a number of nonprofits, to which they give back 10% of any donations or funds sent their way. Some of these partners include the Alagille Syndrome Alliance, Project Sebastian, the Scheuermann’s Disease Fund, Hope Kids, and CDHI.

Advice for Rare Families

In the end, Jeff and Eden are passionate about making a change. They’re passionate about changing lives. And they’re addressing that goal in the best way that they can. But outside of My Rare ID and the other offerings, Jeff has some advice for families within the rare disease world.

He says:

Don’t try to tackle everything at once, even though everything is going to come at you at once. In the course of a few days, your entire world is going to be turned upside down and there’s things that you were accustomed to controlling that you’re no longer going to be able to control. So control what you can, mitigate what you can’t, and the rest? Go on faith.

Don’t apologize – and that’s something very big and that I’ve seen in my own life. There are going to be people who are probably never going to understand what you’re going through. Don’t apologize for prioritizing your family’s needs and wellbeing. And finally, don’t be afraid to ask for help. Rare diseases can be challenging on a marriage, but back each other up. Don’t leave. You have to get in there and back each other up no matter what.

So where will we see Jeff and Eden next? Well, consider checking out the Rare Fair, spearheaded by The Dash Alliance. While the Rare Fair has always been virtual, 2023 will be the first hybrid event in Raleigh. In addition to Rare Disease panels, you may just meet some incredibly inspiring individuals. We’ll see you there!