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Patient Advocacy Toolkit: Social Media

Create a social space on the web where people can find information on you and relate to you


Twitter: Considered an information network with between 200 to 300 million users. Good to check for real time information and follow relevant stakeholders. Messages must be no longer than 140 characters. Use of hasthtags (#) before key words helps your information come up when people search your area of expertise. Twitter is effective for broadcasting your news and live events such as conferences. Requires regular updating. Use Bitly to shorten links (https://bitly.com).


Facebook: Considered more of a social network, where people "connect". Over 700 million users. Including photos and longer texts, it is a more "curated" experience. Originally used mostly by teenagers, the fastest growing segment today is the 55 to 64 year olds. Needs to be "fed" regularly and you must be ready to spend time interacting with your "friends". Useful to drive people to your website. Also useful for promoting events, sharing links, enhancing the "word of mouth" effect. More tips on: https://www.facebook.com/business


Linkedin: A professional network, useful for sharing information or finding volunteers, employees, donors and board members. You can also "follow" other non-profit organisations and learn from what they are doing to promote their causes. Creating a page allows you to post status updates, share news, find volunteers and grow your community. http://nonprofits.linkedin.com


YouTube: Good for sharing video content. For example, sharing patient or doctor testimonials, and calling for funds. Also useful to create tutorials. Create an account, a channel and set up key words so people can find your videos. https://www.youtube.com/user/nonprofits

Follow-up and Monitoring

  • Engage with your followers: "like" their comments on your page, answer their questions, retweet their tweets, share their relevant information. This is not a one-way road. Social media is meant for engagement and creating networks.
  • Check if your communications are being effective by monitoring your results. Facebook, Twitter, YouTube and Linkedln all offer statistics of how many people have been looking at your posts and whether they have been sharing your news or clicking on your links. Study the posts that were most popular and get ideas of what is working with your audience (meeting their needs). You may also use tools such as sprout social (https://sproutsocial.com) or hootsuite (https://hootsuite.com) to help you manage your social media accounts (they are especially useful for scheduling posts at a time when most people are using the networks and statistics on users).

Download the complete Rare Cancers Europe Patient Advocacy Toolkit

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