How to advocate for Rare Diseases on social media

We’re thrilled to introduce you to our first-ever collaboration on the blog! Anna Suarez is an advocate for patients, caregivers, and anyone impacted by mesothelioma, which is a rare cancer that is diagnosed in less than 3,000 people each year. Anna’s work focuses on raising awareness, educating others about preventative measures, and supporting the rare disease community as a whole. She firmly believes that our voice is stronger when we work together, and is looking forward to Rare Disease Day 2018!”

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Raising awareness about rare diseases can be a means to show emotional support and compassion for patients and families, encourage donations to research, and educate the broader public. Due to the fact that rare diseases by definition affect a smaller portion of the population, many people are unfamiliar with or may never have heard of these conditions. Social media offers a larger platform to get the word out about specific diseases or overall community. Additionally it can provide a larger support community and a way for patients and caregivers to connect despite large distances.

This leaves the question, how can patients or organizations in the rare disease community best utilize social media?

For advocacy organizations especially preparation is key to maximizing the impact on social media. Keeping track of any relevant holidays or campaigns is a major part of this, and listing these events in the form of a calendar is an easy way to stay organized. There are many variations of awareness calendars that can be found online, like this one shared by the United Nations. Creating an editorial or social media calendar with upcoming awareness holidays ensures that you won’t miss a chance to connect with the larger community and support your cause. For those advocating on behalf of a rare disease, these opportunities cannot afford to be missed. Many rare diseases, even with that aid of a major holiday, might not receive the attention that is due.

One of the biggest holidays for the rare disease community is Rare Disease Day, which takes place on the last day of February each year and brings together the entirety of the rare disease community to amplify their reach and bring attention to all rare diseases. Individually, cancers like mesothelioma, neurological conditions like central diabetes insipidus, or genetic disorders like Huntington’s disease might only be vaguely familiar, and some, unfortunately, have a grim prognosis. Celebrating Rare Disease Day allows for advocates for all of these diseases to collaboratively raise awareness and make a larger impact.

Finding the relevant organizations and influencers is also a great way to keep track of any upcoming awareness days or campaigns (which you can then include on your calendar!). Advocates may not necessarily be aware of every upcoming holiday, even if they find an online calendar. The calendar from the UN mentioned above doesn’t actually include Rare Disease Day. Following other organizations or influential people can help fill in any gaps and ensure that advocates are aware of future campaigns. Additionally, creating a mental map of other influencers in the community can help illuminate opportunities to collaborate and form partnerships between groups that advocates may not realize were possible.

Other than keeping track of the larger landscape or big picture, it’s also important to prepare for as many of the smaller details as possible. Taking an inventory of any content that you may want to share, such as photos, blog posts, infographics, etc., will make it easier to plan content as you discover upcoming campaigns. Compiling a list of relevant hashtags will also make drafting posts for Twitter, Instagram, and Facebook. Doing this work up-front can help save time in the long run and prevent any last-minute confusion or potential missteps and allow for any post to reach the largest possible audience.

With organization and the preparatory work completed in advance, you can then move on to determining which events in which you can participate. It’s important to note that the extent of your social media presence really depends on internal resources for an organization or the time commitment an individual is willing to make. Some may find that the conversational style of twitter is better suited to the content that they’re interested in sharing. If that’s the case, Tweet Chats may be an important way to engage with others in the community, either as a host or a participant. Hosting an online event may seem daunting, but luckily there is some great advice available, like this post from Hootsuite.

Fully utilizing social media allows advocates and groups that support rare diseases to increase both their individual and collective impact. These tips should help to make the most of any social platform, and can hopefully lead to a greater awareness about rare diseases.




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