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The Birth of Advocacy in Nepal

2025-01-24T09:41:57+01:00January 24, 2025|Uncategorized|

In the whirlwind of just a few short weeks, HAE Nepal became HAEi member country #101. Its driving force is Ganesh Dahal. Global Perspectives caught up with him, and pioneering Nepalese immunologist Dr. Dharmagat Bhattarai, to hear more about the situation in the country, and what it takes to start advocacy from nothing. Ganesh’s [...]

HAEi: Leading Positive Change for 20 Years

2025-01-06T13:36:55+01:00December 23, 2024|Uncategorized|

HAEi is a global non-profit network of patient associations dedicated to improving the lives of people with HAE. 2024 was HAEi’s 20th year of raising awareness of HAE, fiercely advocating for those with HAE and supporting our Member Organizations to address the unique needs of people with HAE and their families. We highlight some [...]

HAEi and ACARE: A strong partnership

2024-11-27T10:55:30+01:00November 27, 2024|Uncategorized|

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, [...]

Two tools to get ahead of HAE

2024-11-27T10:55:27+01:00November 27, 2024|Uncategorized|

Taking advantage of healthcare professionals and patients being in the same room, Henrik Balle Boysen and Jørn Schultz Boysen grabbed ten minutes each to share the latest updates on two HAEi technological tools. Giving the fuller picture – Using HAE TrackR Henrik spoke first, reminding the audience that HAE TrackR is an easy-to-use electronic [...]

The latest on HAE with normal C1-inhibitor

2024-11-27T10:55:23+01:00November 27, 2024|Uncategorized|

Making the complicated simple is a specialty for Professor Marc Riedl, but even he had to admit that HAE with normal C1 is difficult. He told the packed conference that ‘HAE with normal C1 (HAE-nC1INH) is a hot topic because it's difficult.’ Nevertheless, he accepted the challenge of explaining the progress made to date [...]

Virtual Angioedema Centers

2024-11-27T10:55:20+01:00November 27, 2024|Uncategorized|

‘Within two minutes, Dr. Katelaris said: ‘I know what you’ve got, we just need to test for it.’ Fiona described her revelatory experience with Professor Connie Katelaris as she joined FIona onstage. Prof. Katelaris was asked to discuss her brainchild, Virtual Angioedema Centers (VAC). These were started in Prof. Katelaris’ home country of Australia, [...]

HAEi’s Patient Driven Research

2024-11-27T10:55:16+01:00November 27, 2024|Uncategorized|

The joint audience of healthcare professionals, patient advocates, and pharmaceutical industry representatives welcomed HAEi’s Chief Scientific Officer, Debs Corcoran, onto the stage. She and Tony Castaldo wanted to tell people about the power of patient-driven research. Tony set the scene by reminding everyone that while emotive patient stories have power, for decisions makers who [...]

Navigating the future of HAE: Ask the experts

2024-11-27T10:55:12+01:00November 27, 2024|Uncategorized|

Probably the most eagerly anticipated Saturday session, Ask the Experts, saw Professor Henrietta Farkas, Professor Anete Grumach, Dr. Teresa Caballero, Professor Connie Katelaris, and Professor Marc Riedl join Professor Markus Magerl on stage. The questions came thick and fast, with Prof. Magerl trying to keep answers below 45 seconds. An audience member asked if [...]

All about the youth

2024-11-27T10:55:09+01:00November 27, 2024|Uncategorized|

Last but by no means least, Debs Corcoran returned to the stage with HAEi’s Co-Ordinator for the HAEi Youngsters’ Community (YC), Victoria Schultz Boysen. Their job, they revealed, was to say a little bit about the importance of the HAEi Youngsters’ Community and the youth advocacy program HAEi LEAP. Debs and Victoria started by [...]

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