Working with social media

Social media channels such as Facebook, Twitter, LinkedIn, Instagram, TikTok and many more are all powerful tools for connecting and engaging with your audience, raising awareness and spreading knowledge.

HAEi will be posting updates about hae day :-) on our social media channels. You can find us via the links below.

Starting to use social media

If you already have social media profiles set up for your own organization – that is great!

If you are not using social media, consider setting up a profile or a page for your organization.

This will make you more visible and easily approachable by people and other organizations.

There are lots of different social channels out there and it can be overwhelming if you are just getting going. A good rule of thumb is not to aim to be everywhere, straight away! Choose one social media platform and start there. Make sure that you think about where your potential followers are, where do they like to spend their time, or look for information. Is it looking through posts on Facebook or reading quick and short messages “tweets” on Twitter?

Following others

Following other organizations, medical professionals, patients, companies from the pharmaceutical industry and HAEi will ensure that you create a a relevant group of people interested in the information you are sharing about hae day :-) and indeed about HAE.

The goal

For hae day :-) the goal is to engage with your followers/audience via posts, likes and re-sharing/posting. Think about how you might want to use social media to promote hae awareness, hae day :-) and any activity you are planning. This is both in advance of hae day :-) and on the day itself.

HAEi will be sharing different updates on all social media channels, please feel free to share them on your social media accounts.

You are also very welcome to make use of the patient stories on to promote HAE awareness and hae day :-) or you can use the images for posts with facts about HAE we have created for you to use on your social media and help us raise awareness. You will find the images among the assets.

More hae day :-) awareness tools

This toolbox contains more sections with good advice and templates with awareness tools



Working with the


Working with the