Late 2019, HAE International and the non-profit organization of leading clinical and research facilities in the field of allergy and asthma GA2LEN established GA2LEN/HAEi Angioedema Centers of Reference and Excellence – or in short ACARE.
The joint venture with GA2LEN fulfills HAE International’s longstanding goal of establishing a worldwide network of accredited angioedema care centers. Together the organizations work on developing ACARE, ensuring that it is an attractive partner for HAE treating physicians all over the world.
Professor Marcus Maurer – the HAE International Chief Medical Advisor as well as the GA2LEN/HAEi ACARE Coordinator – explains:
“GA2LEN/HAEi ACARE takes on board not just the physician side of things, not just the patient side of things but truly a combined effort. We do the whole process as a peer review network where all the ACARE Centers audit and certify each other with the aim of bringing a strong network to the game that provides excellent patient care. That is the cornerstone of it all. But GA2LEN/HAEi ACARE also moves knowledge on angioedema by research and projects – and it is a network for advocacy and awareness to increase the attention that this disease receives.”
Establishing ACARE through cooperation with GA2LEN has given HAE International the certified accreditation program that the organization has been looking for as well as an inclusive solution where nobody will be left out as ACARE aims to be a worldwide network of specialized treatment centers.
GA2LEN/HAEi ACARE is based on 32 requirements that must be met for a hospital to become accredited. Among these requirements are multidisciplinary approach, structured and valid protocols of diagnosis and management, assessment of patient satisfaction and unmet needs, support of the ACARE network, a “Never give up” attitude, knowledge and use of current nomenclature as well as classification of angioedema, family screening, scientific and educational activities as well as a cooperation with the patient organization in their country.
“If you wish to become an ACARE Center, you reach out to the ACARE office and apply. It’s a very simple process: The office will assign an auditor to you – that’s the head or the deputy of another ACARE – and they then come to you to go over the 32 criteria to make sure that all of them are met. Once this is done the recommendation for the decision goes to the Steering Committee, and then you are accredited and receive a certificate valid for two years. It is then followed by a re-audit to make sure that the high standards are being met over time. By this process we grow as a network because each audit and re-audit is a nice opportunity for one ACARE to talk to another ACARE, to learn from each other and to work together on projects and other initiatives”, says Professor Maurer:
“Interacting with patient organizations is within the criteria: You must have a link to a patient organization in order to be accredited. But ACARE is the evolution of this because this is not just being linked to a patient organization. You must have true partnering with the patient organization.”
Professor Maurer points out that HAE International has affiliations in many countries around the world “where physicians need help and where they need to interact with patients to implement these centers of excellence and reference.”
“We are growing fast as we have around 40 accredited and certified ACARE centers, while we have ten applicants and 43 centers which have expressed interest in joining the network. I am pretty sure we will reach 100 centers before the three-year mark is up and that we will have an ACARE in every continent by the end of the year”, says Professor Maurer:
“This is an experiment, but it’s a very exciting and promising one where true partnership between physicians, patients and other partners can bring the best to patient care and to improving knowledge and understanding of the disease.”