RARE Toolkits

Below is a list of all of our current RARE Toolkits.




Most rare diseases are not well understood, do not have a cure, and have limited treatment options available. Therefore, living with a rare disease is an ongoing learning experience for many patients and their families.

By telling a personal story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis and help to raise awareness. Personal stories frame our individual rare experiences in a way that lets us better connect. To learn more about why rare disease stories matter and how to put together a story, turn to the Using Storytelling to Raise Awareness for Your Rare Disease toolkit.

This toolkit complements our Using Storytelling title but goes one step further by helping storytellers bring greater awareness to their personal journeys by taking advantage of social media. This Toolkit focuses on the value, use, and practical application of social media to promote our stories.

What is Social Media?

Social media is a term being tossed around a lot lately, but what exactly is it? The best way to define social media is to break it down. Media is communication channels through which news, entertainment, education, data, or promotional messages are disseminated. So social media would essentially be a social channel of communication.

The channel doesn’t just give you information, but interacts with you while giving you that information. A couple of examples of interactions are:

•Sharing information you find relevant;

•Asking for comments;

•Letting users vote on a campaign; and

•Allowing contributors to build an online information source.

Think of traditional media as a one-way street where you can read a newspaper or listen to a report on television, but you have very limited ability to provide feedback. Social media, on the other hand, is a multi-lane highway that gives you the ability to communicate back and forth.

This short animation Paradigm-shift in information flow is narrated by e-Patient Dave and introduces ideas presented by Lucien Engelen. It will help you to visualize how the changing flow of information is changing health care as patients are more engaged.