Last week Patient Worthy attended ALD Life’s Community Weekend 2018, where Anne and Joel Buckland from the marketing agency We Do Stories talked about how to bring attention to rare diseases online. Here are five of their tips for raising awareness on social media websites such as Facebook, Twitter, and Instagram.

1. Decide what you want to support

Think about which disease or diseases you would like to raise awareness for, and learn about the charities working on these conditions. There might be certain organisations that stand out to you and that you would particularly like to support, or even a particular area of a charity. By supporting an organisation through social media Anne says that the message will “spread far wider than the reach the charity themselves have alone.”

2. Engage

“The more you like, comment, and share, the more people will see it,” says Joel. Engaging with social media posts tells the platform’s algorithms that the post is important and should be promoted further as if it is of interest to you then it might be of interest to others. Any engagement with the organisations you support on social media will increase the visibility of their profile and share their content with more people.

3. Keep it simple

You might know a lot about a certain disease – but bear in mind that if the disease is rare, other people might know less. “These can be complex diseases,” says Anne, but she says, “instead of overloading people with information, you should make sure that any posts you write will be understood and make people want to learn more.”

4. Share the positives

A good way to help people to engage with your social media posts about a disease can be to share positive things as well. If people you know have raised money, or have had good news from the doctors, or if you’ve read something about a research breakthrough, it could be something that you would like to share more widely on social media. “People like to follow a story through its highs and lows and it’s important to share hope” – Joel.

5. Do it how you want to do it

Ultimately, deciding how you would like to raise awareness for rare diseases online is a very personal thing. Some people find it cathartic to share their own experiences of the disease, while others prefer to remain more private. Anne and Joel recommend only sharing what you are comfortable with, and keeping in mind that there are many ways to support an organisation or raise the profile of a disease – from talking about personal experiences publicly, or sharing your story for charities and news sites to publish anonymously, to following charities’ social media accounts. Anne says, “There’s no exact formula for how to do this, the most important thing is to be authentic.”

Talking about a rare disease on social media sites can be a great way to raise awareness about the condition and help your friends learn more about it. The main thing that Joel and Anne emphasise is that “your voice matters” – your support through social media has an impact.

What are your thoughts on using social media to raise awareness for rare diseases? Share your stories, thoughts, and hopes, with the Patient Worthy community!