Hello everyone. My name is Rachel. You might’ve met me. I’ve lived with HAE from a very young age, enduring unpredictable attacks and remaining undiagnosed during my childhood. I empathize with the emotions associated with living with a medical condition and the struggles that arise from a lack of sufficient support.
My long period without a diagnosis makes me passionate about better care. So, in August of this year, I was delighted to take on a new role as Coordinator, Global Advocacy and ACARE. But what is ACARE, and what could it mean for people like us with HAE?
ACARE, which stands for Angioedema Centers of Reference and Excellence, is a unique, equal partnership between HAEi and GA2LEN (Global Allergy and Asthma European Network). It aims to develop and accredit centers of great angioedema patient care, including HAE, fulfilling a longstanding HAEi goal of establishing a worldwide network of such centers. Both organizations work on developing ACARE, ensuring that it is an attractive partner for HAE treating physicians all over the world. Since its launch in 2019, ACARE has grown to 91 certified centers, with 13 more applicants undergoing certification across 37 countries worldwide. Ultimately, we believe ACARE will become an inclusive solution for everybody; wherever they live.
The role of Coordinator, ACARE is a bridge between HAEi and GA2LEN, ensuring that information flows smoothly and efficiently, disseminating updates, news, and opportunities and resources to help actively engage ACARE centers and members. By bringing together the largest network of specialists dedicated to treating angioedema globally, and HAEi, a global community of 99 Member Organizations, we can do more to reach and support people with HAE across the globe.
HAEi and GA2LEN share many objectives, including increased education about HAE. We are also dedicated to enabling individuals residing in more remote areas to gain access to a specialist center, vital HAE testing, and treatment options, consequently enhancing their quality of life.
I’ve been a part of the HAEi since 2014, including serving as a member of the Board of Directors. This new role excites me about opportunities to improve people’s lives. I look forward to telling you more and sharing stories in the coming months. In the meantime, if you have any queries or ideas about ACARE, please don’t hesitate to contact me at gro.ieah@slanna.r
Rachel
In the 2023 December issue of Global Perspectives, we asked ACARE centers from Asia Pacific, the Americas, and EMEA to tell us about their ACARE journey.
>> Click here to read their ACARE Answers.
