For the Saturday afternoon sessions, participants in the GLW were joined by their healthcare professional colleagues from the GAF to create another mega meeting, “GAF Meets GLW,” of around 750 people.

It was fitting, therefore, that the first session was a presentation on ACARE, a joint initiative bringing together the patient advocates at HAEi, and the expert physicians in GAL²EN (an organization dedicated to allergy and asthma research). Tony, Henrik, and Professor Markus Magerl took the stage to provide an update.

Tony and Henrik opened the conversation by taking everyone back to 2019 and heady, pre-COVID days. They told us that the HAEi board wanted to enhance the relationship between physicians and patients, but they just couldn’t think of how to make it happen. Scrabbling around for a solution, Tony and Henrik got their inspiration from a mention of Professor Maurer’s name. He’d pioneered a network of clinics in urticaria; why couldn’t this be repeated in angioedema? Well, it could, and the result is ACARE.

ACARE has grown to over 100 member centers in more than 40 countries. The later Professor Maurer drove ACARE, but this work will continue.

‘ACARE is a key part of the quest to dramatically increase HAE patient quality of life.’

– Tony Castaldo, CEO HAEi

Referencing delays of five to ten years (or more) before an HAE diagnosis, Prof. Magerl said the common problem was one of education. Doctors don’t know how to diagnose HAE. However, even after a diagnosis, it is not self-evident that patients will get the correct treatment.

At the heart of ACARE are programs that educate doctors. These include webinars, which in the last year have reached thousands of physicians from over 50 countries. Beyond webinars, experts travel globally to educate their clinical colleagues about HAE. In the previous year, face-to-face events have occurred in India, South Korea, and the United Arab Emirates.

‘How do patients benefit from ACARE? Put simply, it means better-trained physicians.’

– Prof. Markus Magerl

Educated physicians are the first step to better care. Every clinician is invited to have their center or clinic become ACARE accredited. The process involves a rigorous, 32-criteria audit to ensure they have the skills and the commitment to treat HAE patients well. Just a few of the criteria are:

• Cooperation with colleagues in dermatology, gastroenterology, etc
• Use of patient-related outcomes
• Partnership with local or regional angioedema organization
• Participation in research to extend access to new and forthcoming medication

Prof. Magerl said that ACARE, along with HAEi, is also critical to the development of angioedema guidelines. The next guideline will be due in the next few years, and it will be essential to clarify how HAE should be effectively managed.

‘Caring for HAE patients is more than just taking bloods, making a diagnosis and writing out a prescription.’

– Prof. Markus Magerl

Finally, Prof. Magerl urged everyone to remember the ACARE registry. This may sound dull, he said, but without gathering together data on outcomes and side effects from as many people with HAE as possible, there is a chance rare symptoms, side effects, or long-term changes may be missed.

‘If you want to find a side effect that occurs in one out of 100 patients, you will have a problem with data from just 90 patients’, he told the audience.

Tony, Henrik, and Prof. Magerl handed the stage to Fiona Wardman, Sarah Foltz Smith, HAE Spain (AEDAF), and Dr. Teresa Caballero to discuss the ACARE collaboration real-life benefits for clinicians and patient advocates.

Collaboration between physicians and patient advocates: An ACARE example

‘Sometimes physicians have ideas about what the patient needs that are far from the reality,’ said Dr. Caballero, a Spanish clinician with an ACARE-accredited clinic. Dr. Caballero stressed the importance of gaining first-hand knowledge of patient needs and one of the many benefits she has seen from her close collaboration with AEDAF.

Fiona asked what the benefits were for an MO. Sarah from AEDAF said that it’s just not sensible to work separately. Doctors can help set up a patient organization, identify patients, and encourage participation. She added that Doctors can give expert advice on aspects of diagnosis and treatment.

‘How does collaboration work then?’ Fiona asked. Both Sarah and Dr. Caballero stressed the need for shared and sustained communication. It is something that requires work on both sides. It is good to work together and know each other’s agenda.

Asked about some of the fruits of this long-standing partnership, Sarah referenced a patient guide about treatment, trips, diagnosis, and many other aspects of life with HAE. Other programs have included patient and physician surveys to identify access to modern medications in Spain.

In conclusion, Dr Caballero was asked what ACAREs can do for advocacy efforts, and she felt that the provision of scientific advice and input into drug funding applications would be a significant source of support.