From Wordle to F.L.A.M.E.S. – our recent awareness-raising journey
77% of people have never heard of encephalitis – it is a statistic we use a lot at Encephalitis International.
You don’t have to look far in the comments on any of our social media posts, YouTube or support forums to hear about multiple trips to hospitals, delayed diagnosis or treatment, and the devastation this causes.
Awareness-raising has always been at the forefront of our work. World Encephalitis Day was launched on the 22nd February 2014 to provide a platform for our community to feel seen and heard. The #Red4WED movement began and often the campaign would centre on emerging research, landmarks lighting up red and fundraisers and gatherings across the world.
We now work with several PR and media agencies to secure placements in local, national and international new outlets where members of our community and celebrity ambassadors bravely share their story. This year’s campaign saw a record 567 pieces of coverage, with an estimated viewership of 21.6 million and 89.5k engagements.
Like any campaign over multiple years, we’ve learnt the value of listening to feedback and evolving.
We began to recognise #Red4WED landmarks, whilst brilliant for showing support for our community, often did not translate into a genuine needle-shift for awareness of encephalitis. Without an accompanying message, those unaware of the condition would simply see a red building. In 2025 we began trialling billboard messaging. A team of avid wordle players, we worked with a design agency to produce a short wordle-based video, one version simply listing other 12-letter words with relevance to encephalitis and the other a list of symptoms. Launched across Picadilly Lights, London and Times Square, New York, the video generated a “buzz” on social media and for those who could attend gatherings at both locations. The video has been watched over 800 times and on the day we tracked QR code scans for more information with just shy of 100 scans.
We hadn’t quite ignited real change yet, but a fuse had been lit and a combination of this Wordle effort and a stroke of genius from The University of Liverpool and Dr Greta Wood, F.L.A.M.E.S. was born. An acronym, like Act FAST for stroke, that could enable both the public and healthcare professionals to quickly recognise common symptoms of the condition. (Find out more about F.L.A.M.E.S. here).
We felt quietly confident F.L.A.M.E.S. had the tools to be a successful global campaign, all we needed now were catchy assets, a media plan and platforms to share the message.
Together with Camino Communications and POP Health Communications we devised a plan for FLAMES assets, working with our community and ambassadors to emphasize the value of FLAMES to the media. We then contact billboard companies around the world to secure F.L.A.M.E.S. teaser placements.
The outcome…
- 567 pieces of coverage with an estimated 21.6 million views and 89.5k engagements
- 884 billboards in 4 countries in partnership with JC Decaux, Lamar Advertising and IDS Media with a gift in kind value of c. £300k and an estimated impressions of 72.5 million.
- Our website unique users during February 2026 increased by 326% compared to January 2026.
- Our FLAMES webpage was viewed 1,113 times during the campaign with PDF downloads of our FLAMES resources contributing to a 39.2% uplift in information downloads during the February.
- Our social media channels during February grew cross-channel followers by 12%, with 971k reel and post views, a growth of 1353% compared to January 2026.
Awareness-raising is often hard to quantify in the healthcare charity space.
F.L.A.M.E.S. will not be a one-off campaign, we are busy planning what the 2027 World Encephalitis Day F.L.A.M.E.S. campaign will be – more billboards, translated resources, celebrity endorsements and community engagement activities are on the horizon.
For now we are proud of how our awareness-raising has evolved and hope to continue to shift the needle for global encephalitis awareness.
We will leave you with one of our members, who emailed us recently following his journey to hospital during an encephalitis relapse in February this year: “I couldn’t believe it, giant posters were observed that morning by hospital staff driving to work. Many of them commented when they found out why I was there. Result!”.
Could you help with World Encephalitis Day 2027 – get in touch!
By Calum Goodwin, Encephalitis International