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Anthology of the Use of Social Media Tools, SmartPhone Apps, And Online Communities: Hereditary Angioedema (HAE)

December 13, 2012

The use of social media tools, smartphone apps, and online communities are used by pharmaceutical companies and patient advocacy groups to reach out and provide support to patients and their families affected by rare or orphan diseases. The purpose of these programs is to help the rare disease community connect with others with rare diseases to help eliminate the aloneness the patient may be feeling.  This is exemplified by the Hereditary Angioedema (HAE) patient community and the pharmaceutical companies that provide the orphan drugs to treat HAE.

ViroPharma on December 12, 2012, launches a new campaign to show “the emotional and psychological  burden of HAE” and to give a voice to patients who live with this rare disease. The purpose of the campaign is to raise awareness of the emotional and psychological burden of HAE on patients that affects their everyday life. The website is

An article from Medical Marketing & Media (MM&M) shows the successful implementation and use of a social media tool to reach out to rare disease patients and families. The article discusses how ViroPharma created the “The HAE Family Tree Facebook App”.

There have been recent smartphone apps available for Hereditary Angioedema (HAE) patients.

Dyax offers orphan drug Kalbitor for the treatment of acute HAE (US only). Dyax in May 2012, launches a FREE smartphone app for the iPhone, “HAE Attack Tracker”. HAE patients use the app as a personal mobile diary to record and track triggers and symptoms of HAE attacks. The HAE Attack Tracker app can be downloaded from the iTunes Store. Dyax also has developed a website for the HAE community,, which is a non-branded disease website for the purpose of educating patients.

Another pharmaceutical company, Swedish Orphan Biovitrum (SOBI) offers the non-orphan drug Ruconest (EU only) for the treatment of HAE prophylaxis. SOBI recently launched a FREE iPhone, iPod, & iPad app, “HAELP”, for HAE patients. HAELP helps users to log the time and length of their HAE attacks using a patient diary function. The application also has an interactive map of European HAE centers and information on HAE in 12 European languages. An Android version of the app is being developed.

Medivo, a health monitoring company for physicians and their patients, announces on November 8, 2012, the launch of a new FREE mobile and web-based app, “HAE Monitor”, for HAE patients. The HAE Monitor gives patients the ability to accurately track their symptoms and disseminate this information to their physicians to optimize their treatment. Other capabilities provided by the HAE Monitor :  questions for doctors, documenting  hospitalization, and socializing with other HAE patients.

CSL Behring launches back in 2007 an online resource for HAE patients. The website, , contains tools such as an online journal for HAE patients to track their symptoms and a “Family Tree” section to help patients track how HAE presents in their families.


Dyax’s “HAE Attack Tracker 1.0” FREE download

iTunes HAE Monitor Version 1.0 Download

Medical Marketing & Media article titled, “Orphan patient communities grow online”

SOBI’s “HAELP 1.1” FREE download from iTunes

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

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