16th May is Hereditary Angioedema (HAE) Day. How do you get more people talking about something as important and life-changing as a rare disease? The answer is to go big, go loud! And this is exactly what we do every year on the 16th May for HAE.
HAE Day is a whole day all about raising awareness of this rare and genetic disorder. And the aim? For more and more patients to receive an early diagnosis so they can live healthy and full lives.
Hereditary angioedema (HAE) is a rare genetic condition that can be extremely uncomfortable to live with, and can understandably make day-to-day life very difficult for patients.1
We want to help these brave patients by improving their journey to diagnosis. The first step is raising awareness and telling the world about this disease. The good news is we have a whole page dedicated to telling you about HAE:
We’re getting ready for another fantastic campaign launch on 16th May. And you can get involved with what we’ll be doing. Just sign up to our newsletter and we’ll update you on our plans nearer the time.
We want to reminisce about our previous HAE awareness days and share the successful results with you.
The international patient support group, HAEi, organises these events every year to promote better understanding and awareness of HAE to help lead to earlier, more accurate diagnosis. This can make such a difference as it means treatment can begin sooner and help those diagnosed to lead a healthier, more positive life.
In 2015 we launched our first major global survey. This survey was carefully designed to help us understand more about the daily lives of people living with HAE. It was completely confidential and it took a closer look at people’s unique experiences in dealing with the disease.
It explored how they coped, how they felt on good days and bad days, how they dealt with specific challenges and how they looked positively to the future.
We were really careful with the questions and worked closely with the international organisation, HAEi, to make sure we found out as much as we could respectfully and professionally.
Later, we translated the survey into different languages and then promoted it all over the world with the support of national HAE organisations. We then collated and assessed all the valuable information we received and used it to develop new patient-friendly tools and care programmes that were much more relevant, targeted and valuable to all concerned.
On 16th May 2016 we helped spread awareness by creating the Shire smile in support of the HAE Day campaign Cover the World with Smiles. The idea was to send messages of happiness and positivity through every smile contributed by patients, family members, friends and anyone else who wanted to help us raise awareness.
All you needed to do was upload a picture or a video with your own HAE message of support for everyone to see, and we’re glad to say it was amazingly well received.
Have you taken part in an awareness campaign or do you have plans to? We would love to hear about it. Raising awareness of rare diseases is so important which is why we want to make as much noise as possible about your activities, events or anything else that gets people talking about rare conditions!