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Patient Advocacy: Reaching Out Through SmartPhone Apps

July 31, 2014

This is the fifth Blog Post in a series that examines the influence and power of patient advocacy groups, foundations, and alliances in helping and influencing the rare disease community.

Smartphone apps are used by patient advocacy organizations, pharmaceutical companies, and healthcare professionals for the purpose of reaching out and providing support to rare disease community stakeholders – patients, families, and caretakers. The purpose of some of smartphone apps is to provide :

•   An online community connecting with others with rare diseases

•   A mechanism for monitoring and tracking a disease

•   Remote diagnostics

•   Information on disease

•   Communication with medical support team.

PatientView, an organization founded in 2000, with the “ .. purpose of understanding the most significant factor to affect healthcare in the 21st century – the patient movement …”., publishes a FREE downloadable report titled, “European Directory of Health Apps 2012-2013” (1st Edition – October 2012). The Directory contains detail facts and information on smartphone health apps that help patients manage their medical conditions. What is unusual about the directory is that all of the health apps are recommended by patient groups.

In November 2013, PatientView launches, the online resource “My Health Apps”, that identifies more than 300 favorite global healthcare apps that are available to the public, patients, and healthcare professionals. Each of the apps are nominated by patient and consumer groups, reviews are provided, and some assessment of the level of usage of the app among the people they represent is presented. These are healthcare apps recommended by healthcare communities from all over the world. The website is searchable and the apps can be viewed:

•   By Disease Category (i.e. Bones & Muscles, Breathing & Lungs, Mental Health, etc.)

•   By Platform Type (i.e. Android, Apple, Blackberry, Nokia, and Windows)

•   In 47 Languages.

Some of the rare disease apps available :

•  Fiftyfifty is a role-playing app from the Scottish Huntington’s Association, which allows a user to steer two fictional cartoon characters through a series of important choices for people affected by Huntington’s Disease

•   HAE Attack Tracker provides the capability for those with Hereditary Angioedema (HAE) to keep a symptom and treatment diary

•   ITP Support App provides information about the rare disorder, Immune Thrombocytopenia (ITP)

•   My Lupus Log provides the capability to record symptoms of lupus to help better manage the condition

•   ODDT presents information about research into cures for rarer, more-neglected, diseases

•   Orphanet is a mobile portal for rare diseases

•   Treatable-ID presents information about the diagnosis and treatment of 81 treatable rare diseases that cause intellectual disability.

Please Note: “Kid Hugging a Rainbow” by Marendo Müller, artwork (Own work) [Public domain] | Wikimedia Commons.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

  1. Thank you for sharing the incredible power of patient advocacy apps to empower and connect rare disease patients. In creating the first-ever narcolepsy mobile app (, I wanted to provide simple patient-focused communication tools and videos – i.e. the resources I would’ve liked when newly diagnosed with this rare and misunderstood condition 7 years ago. Also, there’s a great daily symptom tracker.

    Interestingly, while attending the Public Relations and Communications Summit in NJ as a patient advocate presenter, I learned that on average, health apps have about 500 downloads each. Proudly, my narcolepsy app (for a rare conditions) has over 800 downloads!

    “We may be RARE, but we’ve got ROAR!”
    -Julie Flygare, JD
    Narcolepsy spokesperson and award-winning author
    Founder, Project Sleep

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