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Reaching Out To Rare Disease Patients: SmartPhone Apps

February 14, 2013

Smartphone apps are used by patient advocacy groups to reach out and provide support to patients and their families affected by rare or orphan diseases. The purpose of some of these apps :

  1. To provide an online community connecting with others with rare diseases
  2.  Provide a mechanism for monitoring and tracking a disease
  3.  Provide remote diagnostics
  4. Information on disease
  5. Communication with medical support team.

According to an Infographic from the Healthcare Intelligence Network (, the following statistics show the rising popularity of mobile health apps :

  1. In September 2011, 17% of cell phone owners used their phone to look for health or medical information online
  2. In September 2012, 31% of cell phone owners used their phone to look for health or medical information online
  3. As of April 2012, among the 84% of smartphone owners, 19% have downloaded health related apps
  4. In 2011, # of global Mobile Health App users is 124 million
  5. In 2012, # of global Mobile Health App users is 247 million.

Susannah Fox, Associate Director and lead author of the Pew Research Center’s Report, “Tracking for Health”, did fieldwork with rare disease communities and found a common theme of “how much the patients or their caregivers were tracking their own health data …. way beyond what is reflected in an electronic medical record .…”.

The Orphan Druganaut Blog has discussed and reviewed several smartphone apps in a recent Blog Post for Hereditary Angioedema (HAE).

Parent Project Muscular Dystrophy (PPMD), a patient advocacy group for Duchenne Muscular Dystrophy (DMD), has a FREE mobile app that will make emergency care information, research news, and advocacy alerts available to the user . The download is available for :

–          iPhone & iPad

–          Android.

Another example of a smartphone app for a rare disease, is the “Help 4 HD Huntington’s Disease Awareness” App Version 1.0 available at iTunes. The Help 4 HD App is compatible with the iPhone, the iPod touch, and the iPad. for Huntington’s Disease, has both the Help 4 HD app for Apple devices and Android devices that can be scanned from one’s phone. The Scottish Huntington’s Association has an app, 50/50 that is FREE to download. FiftyFifty is an iPhone app exploring issues around Huntington’s Disease.

There is even an app for Chronic Fatigue Syndrome (CFS) called ActiveME from NHS. This app allows one to track and monitor daily activity levels. The user picks from 4 activity grades, and then records each personal activity (in terms of energy level) on a daily calendar and graph. The app analyzes patterns in personal energy levels.

Bodymap Apps is in the process of developing apps for Fibromyalgia, CFS, and ME : FibroMapp, CFSMapp, and MEApp.

Copyright © 2012-2013, Orphan Druganaut Blog. All rights reserved.

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