Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis or an ongoing chronic illness. Sometimes it can feel like a triple whammy – the diagnosis of serious illness, difficulty finding information about a rare disease, and the impact of treatment, schedules, and emotional stress on the entire family. Wouldn’t it be nice to find some applications for smartphones, tablets, and other devices that would make life easier for everyone? We've culled some great apps and ask you to become an "Apps Advocate" by letting us know YOUR FAVORITE APP, with an end goal of creating an online resource list for patients (with their caregivers and family) challenged with chronic illness or rare disease issues. These apps can help you organize and manage treatment schedules, medical appointments, drug lists, nutrition planning, caregiver coordination, and MORE.
More apps roll out each month, so if you find a wonderful resource for those challenged by a rare disease or chronic illness, be an advocate and suggest apps that have real value for patients, families, and caregivers. Help yourself- Help others! It's a great way to get involved with rare disease advocacy efforts. (Find an app you feel we should post as a resource? Please email Linda@atypicalhus.org with the apps details and a link.)
Note: The Atypical HUSFoundation does not endorse any products, good or services. Any mention of such is strictly for informational purposes, without benefit to individuals or our organization, and any perceived value should be reviewed objectively by our readers.
This page of Patients and Caregivers contains information gathered, or modified slightly, from app descriptions posted online.
MyMedSchedule (Mobile Version for Android and iPhone) http://www.mymedschedule.com/
Compatible with: Android, iPhone, iPad, and iPod touch. Requires iOS 4.2 or later. Cost: FREE
Mobile App at http://mymedschedule.com/home/about_mms_mobile.asp
Patients and caregivers can use the MyMedSchedule app to manage meds and labs on the go, set reminders, and make it easier to communicate with their healthcare providers. This app can track medications and appointments, and be used to create schedules to both read and print (in English or Spanish). It includes My Health Tracker to let patients or caregivers record lab results and vital signs.
Care After Kidney Transplant - http://www.kidney.org/apps/app_KidneyTxCare.cfm
Compatible with: iPhone, iPad, and iPod Touch (Requires iOS 5.0 or later) Cost: FREE
They State: “This App for patients was created as a convenient way to learn how to stay healthy with a kidney transplant.” It has FAQs about post-transplant care, issues, and common concerns.
Compatible with: iOS iPhone, iPad, and Android devices (smartphones, tablets) Cost: $7.99
They State: “RENAL TRKRR provides information and tools to allow patients with chronic kidney disease to manage their illness by tracking their food intake, their medication, their lab results”, and more. Their Nutrition TRKRR component “shows the levels of potassium, phosphorous, protein, sodium, carbohydrate, and water consumed throughout the day” and there is also a Medication Trkrr section to this app.
Compatible with: iPhone, iPad, Kindle and Android (smartphones, tablets etc) Cost: $1.99 (Amazon)
Need to watch the 3Ps – Phosporus, Potassium, Protein? This app helps people with kidney disease make better decisions about their diet. If you are facing Chronic Kidney Disease (CKD) or End Stage Renal Disease (ESRD), becoming aware of the sodium, protein, phosphorus, and potassium in your diet is key. (For each app sold, a portion is donated to the George Lopez Foundation’s mission to help children with kidney disease.)
Compatible with: Requires Android 1.6 and up Cost: FREE
iDialysis is a mobile application for patient who are using dialysis machines.
The application able to record your blood pressure when using the dialysis machine, records patient weight during treatment, and records a post- treatment notes. That information can be viewed in either tabular format or line and bar charts.
ICE: In Case of Emergency
Compatible with: Android 2.2 and up Cost: $3.99
The ICE: In Case of Emergency App stores important information for first responders and hospital staff to use in case of an emergency involving you, to include: calling your emergency contacts (can call within the app), doctor’s names and numbers (can call within the app), medications, flexibility to add special instructions and more. Choose to use the ICE widget to your system lock screen, or optionally share some or all family info with ICE within their additional “Family Info” category Multiple languages to include Spanish, French, German, Japanese, Hebrew, and more. Optionally choose to email selected information (e.g., to your doctor) or also use the (FREE) web version of Family Medical Info (FMI) to create & edit profiles on your computer.
Compatible with: Requires iOS 4.2 or later. Compatible with iPhone, iPad, and iPod touch Cost: $0.99
This emergency contact list not only allows emergency personnel a quick and easy way of finding out exactly who you would like to be contacted, but this ICE app also provides a central place for you to record medications and other vital information related to your medical condition.
Lists of the most common allergies and medical conditions as well as hundreds of medications are provided to make setup quick and easy, or you can add addditional categories and options to customize your app to your specific condition or needs.
Compatible with: iPhone, iPad, and iPod touch. Requires iOS 6.0 or later. Cost: FREE
Kidney APPetite helps patients track, manage and adjust their daily nutrient intake to achieve their nutrition goals. Whether you are the patient or a caregiver for someone living with chronic kidney disease (CKD) on dialysis, this app will help you work withyour renal care team to set personal guidelines for getting the right amount of nutrients from the foods you eat, along with fluid intake. (American Kidney Fund with Sanofi)
Care Zone http://app.lk/carezone
Compatible with: iPhone, iPad and Android (smartphones, tablets etc) Cost: FREE
Features include a shareable journal, which includes ability to log observations and upload photos to keep caregivers and family informed, shareable task-list to help you keep on track, and some medication tracking. A unique feature is the apps ability to offer a “CareZone broadcast” that allows you to “send a recorded voice message to up to 100 recipients.”
Compatible with: iPhone, iPad and Android (smartphones, tablets etc) Cost: FREE
Android: Requires Android 2.3.3 and up https://play.google.com/store/apps/details?id=com.caringbridge.app
Compatible with iPhone, iPad, and iPod touch. Requires iOS 7.0 or later. This app is optimized for iPhone 5. https://itunes.apple.com/us/app/caringbridge/id365726944?mt=8
This app is offered by the CaringBridge website, committed to bringing friends and family together during any form of health journey. Their non-profit offers a free webpage where people in time of need can share updates, photos and videos to connect with friends and family who care and want to help. The Android app has a new personal fundraising option.
App: https://itunes.apple.com/us/app/unfrazzle/id638456145?ls=1&mt=8 Cost: FREE
Compatible with: iPhone, iPad, and iPod touch. Requires iOP 4.3 or later. Possible Android?
Unfrazzle is a time and activity management app that helps caregivers remember and track the full range of their caregiving tasks, and stay in-sync with other caregivers. This app lets tech-savvy people customize and keep tabs on several care categories at one time with unprecedented flexibility. Bonus: This app is available in multiple languages: English, German, Northern Sami, and Spanish.
WE Need Your INPUT and assistance in finding more apps to help our patients, families, and caregivers. Please send YOUR app suggestions to Linda@atypicalhus.org and be a rare advocate!