We’ve collected the activities and counted all the steps, and you – our HAE community – smashed it, putting your best foot forward for HAE awareness with a massive 211,012,980 steps for hae day :-) 2025. A 17% increase from 2024!
All those step-related activities add up to 4 trips around the world, a new record for hae day :-)
Fiona Wardman, HAEi Executive Vice President and Chief Advocacy Officer, said: “There’s always so much going on for hae day :-) and this year, our community took even bigger strides! Every event is the power of advocacy in action. When we work together, there’s no limit to what we can achieve.”
This massive step count resulted from the 8,731 activities logged on the official hae day :-) website, as part of the ongoing physical and wellbeing activity challenge, #active4HAE, now in its third year. In 2025, individuals and groups from 44 countries took part, many answering the call to be #active4HAE in purple. Here are just a few of the images shared.
You can see the activity tables for the #active4HAE challenge as well as our collective final results at our hae day :-) website, haeday.org.
You can also see if you can spot yourself in this specially produced photo-mosaic from HAEi’s RPA East Asia, Yong Hao Lim.
Why purple?
Purple is 1 of the colors in our hae day :-) logo and has been adopted by many HAE Member Organizations (MOs) as the color they use in their activities for hae day :-) such as releasing balloons or lighting up buildings. It is also a color associated with rare diseases, as it is one of those used by Rare Disease Day.
Member Organizations’ creative awareness
Illuminated buildings, books, a concert, and patient days are just some of the examples of creative MO activities that took place during hae day :-) 2025. In Ireland, the medieval Swords Castle, located outside of Dublin, was an imposing sight bathed in purple light to celebrate 16 May. This was the first time a monument had been illuminated in Ireland.
AEDAF (HAE Spain) collaborated with the Madrid Marine Infantry Symphonic Band on a benefit concert. To the best of Global Perspectives’ knowledge, this is the first time a concert has been held as part of hae day :-). You can watch the whole concert and see how they incorporated #active4HAE in purple.
Even if you can’t see them, they exist
Our main mission, as members of AEDAF and as patients diagnosed with HAE, this rare disease, is to spread the word so that it can be known and researched. It’s difficult when these diseases are invisible and they’re invisible, because the percentage of people who suffer from them is so small that it seems as if they don’t exist. The same thing happens with music. Music can’t be seen, but it can move everyone through sounds made by instruments or voices, and they also substantially vary the same melody, just by changing the person playing it. The same thing happens with angioedema. The same disease, the same symptoms, and it affects those who suffer from it in completely different ways.
With this concert, we at AEDAF wanted to unite these two invisible concepts: rare diseases and music. And through the latter, which has the power to be heard with the heart, we wanted to give visibility to the former.
May music serve as a platform so that the voices of people who need to be heard, accompanied, and understood can be heard.
I would like to thank the Spanish Navy, the Madrid Marine Infantry Band, led by its director, Miguel Ángel Mateo Gijón, and the AEDAF partner companies, CSL Behring, BioCryst, and Otsuka, for their support in this project.
Through it, we have been able to demonstrate that, even if they are not visible, rare diseases do exist.
Juan Carlos Valera Ramírez, Vice Presidente AEDAF
In addition, hae day :-) saw patient information events take place in Greece, Portugal, and Italy (to name a few), giving people with HAE and caregivers a chance to meet, share experiences, and have their questions answered by HAE experts. To coincide with hae day :-) 2025, the popular The Rare Boy and the Talkative Little Balloon by Natasa Angjeleska was translated into Spanish, while HAE Costa Rica officially launched another book, this time sharing the experience of a single patient.
That’s just a snapshot of all the powerful advocacy and awareness activities that took place. Thank you to everyone who took part in making hae day :-) 2025 such a success! If you’re excited for next year, don’t forget to keep an eye on the HAEi website for more details about hae day :-) 2026.