Rare Responds: Apps for Care Management?

May 27, 2013

“What phone and tablet apps have you found to be very helpful when managing the care of your rare disease or someone with a rare disease?” We took our query straight to the rare community via our Facebook page.  Here’s what you had to say!

One thing I do is save medical information on Google drive in a document. Sometimes I’m not able to print out all the information before I collaborate with a medical professional- but by downloading the Google Drive App and saving info in documents you can have it on your phone or tablet when on the go!


I have found a free iPhone app called Drug Hub, it’s the best I’ve found so far for managing medication.


RxMindme. For complex timing/dosing of many different medications. Keeps tabs on quantities on-hand and alerts when it’s time for refills as a great bonus.


I use babyesp. Originally used for things like bottles, growth stats and diapers but we now use it for tracking meds, med reminders, tracking oculogyric crises duration and time (activity log) and we sync between multiple phones. The log can also be emailed to the doctor from the app.


My Fitness Pal or the LIVESTRONG Calorie Counter for my daughter food diary and calorie intake. She needs high calories so can make sure she gets enough each day.


My Pain Diary. I have the app on my iPhone and love it!


Missed our Rare Responds post? Remember to check in on Facebook to  let your voice be heard and comment below with any further suggestions for other patients!

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