Rosie’s Global Conference Story

The 2014 Global conference in Washington DC was a wonderful experience and I’m incredibly grateful to HAEi for organizing it. They put together an extremely memorable event.

During the conference I was given many opportunities that I wouldn’t have had otherwise. It was great to meet and talk to so many other patients – especially as in New Zealand we have a very small HAE population.

We were able to exchange stories and give each other advice, and it was comforting to have so much support around me.

The programme for the weekend included a range of great speakers:  members of the HAEi Executive Committee, medical professionals and researchers, patients and family members. Through these fascinating speeches we learned a lot more about the latest treatments and research, how far we’ve come in recent years, and what to look forward to in the future.

I particularly enjoyed hearing Dr Aleena Banerji, Associate Professor of Medicine at Harvard Medical School. She was very progressive and inspiring, and I felt she had a good understanding of what it’s like dealing with HAE.

My dad had the opportunity to speak to Anthony Castaldo, the president of the HAEi Executive Committee, who, despite being frantically busy, seemed to have time for everyone. We found him a truly inspirational advocate and his message, “because it’s personal”, really brought home the importance of patient advocacy.

As well as charting the rapid progress in treating HAE, the conference highlighted that much still has to be learnt about the disorder. One encouraging development is the establishment of a specialist clinical and research facility at UCSD (University of California, San Diego). Professor Marc Riedl, one of the leading lights of this project, was also inspiring with his down-to-earth approach.

For me personally, talking to some of the drug company representatives and other patients about the administration of C1, gave me much more confidence in dealing with and administering my own medicine.

Last but not least, the social side of the conference was a whole lot of fun. The Hyatt Hotel was a great venue, with excellent food and entertainment.

I hope to attend the next HAEi conference in 2016, and encourage anyone else who is interested to do the same. I’m sure, like me, you’ll get so much out of it.

You can now see the Video from the Washington Conference on Youtube2014

By | 2017-04-03T10:45:18+00:00 25 Aug 2014|