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Rare Diseases: Health 2.0 Online Patient-To-Patient Communities

May 12, 2015


What is Health 2.0 ? What implications does it have for online patient-to-patient communities ?

The first thing to define is what exactly is Health 2.0. The use of the term “Health 2.0” is quite extensive in today’s world of the Internet. For purposes of this discussion, the best definition of this term is from an article in the Journal of Medical Internet Research, “Health 2.0 and Medicine 2.0: Tensions and Controversies in the Field” :

“ … is the use of a specific set of Web tools (blogs, Podcasts, tagging, search, wikis, etc) by actors in health care including doctors, patients, and scientists, using principles of open source and generation of content by users, and the power of networks in order to personalize health care, collaborate, and promote health education … a mechanism to provide customized health care, such as connecting patients with rare conditions …”.

Health 2.0 provides a means for disease specific patient communities to connect, communicate, and share data on treatments, symptoms, and outcomes, for the purpose of improving their decision making ability and for improving their quality of life. As Health 2.0 online tools become more easily and widely available, there has been a rise in niche online communities where rare disease specific patients can discover the benefits of shared conversation between those who have the same condition.

One such online patient support community for rare diseases is Ben’s Friends. In 2006, Ben Munoz suffers a brain hemorrhage that is life-threatening. Mr. Munoz creates an online support community to connect with other patients, which eventually led to the founding of Ben’s Friends, a network of patient communities dedicated to providing support for patients with rare diseases. The organization’s mission is to “ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.” So far 33 online patient communities are created and launched for such rare diseases as Fabry Disease and Amyloidosis. An interesting page on the website has rare disease community statistics. One can join and create a new rare disease group in the organization’s incubation site. Social media contact information :

  1. YouTube
  2. Blog
  3. Facebook
  4. Twitter: @bensfriends.

Another online patient-to-patient community specific to the rare disease patient, is the global organization Rare Connect, that is created by a partnership between the National Organization for Rare Disorders (NORD) and Rare Diseases Europe (EURORDIS).

There are also online patient-to-patient communities that are on a rare disease’s nonprofit organization’s website. These types of communities are a safe and trust-worthy space for patients and family caregivers to communicate with others around the world. Other online patient-to-patient communities, such as Inspire and PatientsLikeMe, provide a place for patients to talk about their health conditions. These are for-profit organizations and are open about providing access to industry through data-sharing partnerships.

Please Note: “3D Full Spectrum Unity Holding Hands” by lumaxart [CC-BY-SA-2.0]  | Wikimedia Commons.

Copyright © 2012-2015, Orphan Druganaut Blog. All rights reserved.


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