Hands up who wants better access to more treatments!!! The HAE Patient Registry can make that happen. Our pre-budget submission is asking the government to slice us a little of the budget pie so we can make it a reality by helping to fund the project. We are asking patients to simply print off the [...]
HAE Australasia is hosting a MEET UP in the Melbourne area at The Boulevard, 121 Studley Park Road Kew. On Saturday February 20th at 12.30PM. It will be a great opportunity for everyone to meet some of the HAE Australasia board, and catch up with other HAE patients & carers in your local area in a relaxed [...]
On 11 December 2015 the Jurisdictional Blood Committee (JBC) considered recommendations by the Medical Services Advisory Committee (MSAC) in relation to the proposed addition of C1 esterase inhibitor concentrate to the national arrangements for supply and funding of blood products administered by the National Blood Authority (NBA). JBC have agreed to the addition of C1 [...]
It is with a mix of apprehension and excitement that parents send their child off to school. For parents of children with HAE, there are added concerns about how to approach their child’s school. On our Resources page, you’ll find some materials to help you and the school work together. These are provided only as a [...]
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Living on a farm six hours by car away from any major hospital is maybe not the sort of thing you would do if you were a HAE patient. Cindy Hughes is – and she does. “A country girl born and bred, I wouldn’t survive in the city" My HAE symptoms began when I was about [...]
The beautiful view of the Swan River provided the perfect backdrop for the WA HAE meet up held at the East Fremantle Yacht Club on November 28, 2015. As patients and carers came together to meet with others living in W.A, friendships were formed and attendees were educated by our guest speakers. A/Professor Richard Loh discussed [...]
The 2016 HAE Global Conference will take place 19 – 22 May 2016 in Madrid, Spain. The theme for the international gathering is “Creative Advocacy for Expanding Access to Therapy.” Attendees at the 2016 HAE Global Conference can expect a wide variety of important information and learning opportunities that include HAE fundamentals, the most recent clinical [...]
Patients attending the 2015 HAE Australasia Patient meeting held in Sydney were invited to participate in a quality of life survey conducted by Professor Connie Katelaris. Her findings indicate that although the situation for those living with HAE has improved, the 2015 HAE Australasia Patient Survey reveals the continuing burden of living with this condition. Twenty two [...]
Western Australia HAE Patients and Carers, are invited to attend a Meet Up to be held in East Fremantle. This is an opportunity to meet with others affected by this condition. It is a chance to share stories and to also hear and learn more about HAE from our guest speakers. Our speakers and topics include: A/Prof Richard Loh - Who will [...]
