Get on the right HAE TrackR

Life with HAE can feel like it’s all about keeping score. Records of attacks are scribbled on scraps of paper. Forgotten folders full of information on past medications. Despite all of this, doctors can be left unable to see the complete picture, which can get in the way of good care. These are just some of the reasons patients told us they put down the notepad and picked up the phone to download HAE TrackR.

“HAE TrackR is a tremendous support for us. You usually carry your mobile phone with you, so you can document or review your progress at any time. It’s a huge improvement over paper-based documentation. It’s very easy to use and also allows you to add your own comments. It greatly simplifies communication with doctors.”

Caregiver, Germany

Both Michal and his son, Louie, have HAE, but finding a pediatrician to supervise Louie’s care was proving tricky without evidence of frequent and severe attacks. Using HAE TrackR, Michal was able to put all the information in one place and crucially share it with a supportive physician to get their help. As a result, Louie receives the regular medication he needs without constant appointments, so the whole family doesn’t have the stress and worry of an attack. 

Another user told us that HAE TrackR helps them keep better records of attacks. “I would have written them down in notes or somewhere on a calendar, but this way I have a better overview.” The app enables them to track the chronology of attacks and their frequency, allowing them to see any patterns more easily. Another person with HAE, from Nepal, told us that the app has helped them track episodes and email these to their doctor, making their life simpler. 

HAE TrackRalso allows people to be more proactive. Troyce, from the United States, who lives with HAE and is also a nurse, told us that she can set reminder notifications for her preventative treatments and keep records of the lot numbers of the medicines she has used. She said: “As a patient, I know how it can seem overwhelming with doctors, pharmacy, and drug manufacturers all wanting information about ‘how are you doing’. The app provides an easy and concise place to keep it and share it if I want to. Additionally, as a nurse working to help patients gain access to HAE therapies here in the US, I help patients understand that documentation is so important for continued care.”

“I truly believe it’s a great tool for better follow-up with our doctors and for assessing the most appropriate medication for us.”

Patient, Mexico

Developed by HAE patients for HAE patients, HAE TrackR is available for free from both the Apple App Store and Google Play Store. All data is securely held, with privacy built in, and patient information can only ever be shared by the individual themselves. 

Patients and caregivers just like you are using HAE TrackR to get better care. Visit haetrackr.org now to learn more and download the app.