Monday, 4 July 2016 - 3:00pm
Buen camino! Good walk – or enjoy the journey - that´s how everyone greets each other on Spain´s historic Camino de Santiago. And we had the privilege of joining 80 others from the global HAE community on a three-day walk that took us through beautiful countryside to the magnificent cathedral at Santiago de Compostela, where pilgrims have trekked for centuries.
Our walk... Read more
Monday, 9 May 2016 - 4:43am
Are you or anyone in your family finding it hard to cope with HAE?
Do you sometimes struggle to remain positive living with HAE?
Would you like the tools to help you cope with HAE? Come and meet with others that share your story.
HAE Australasia is teaming up with Dr Chris Basten Clinical Psychologist to facilitate small group workshops on living with HAE.
Dr Basten... Read more
Thursday, 28 April 2016 - 8:16am
Quite a number of people have told HAEi that they would really have liked to participate in the Camino Walk in northern Spain but are unable for one reason or the other. Therefore they have arranged a global HAE walk. It works in this very simple way:
You can participate wherever you are. All you need to do is
(1) walk any distance you like wherever you like – on... Read more
Friday, 8 April 2016 - 7:27pm
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 letter to your Minister and the 2016 Budget Submission summary sheet, locate your... Read more
Monday, 8 February 2016 - 1:55pm
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 & fun environment. Kids are most welcome.
Please RSVP to... Read more
Friday, 5 February 2016 - 5:31pm
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 esterase inhibitor... Read more
Thursday, 17 December 2015 - 8:50am
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 general guide, and need to be personalised to reflect your child... Read more
Monday, 14 December 2015 - 8:57am
DONATION GIFT REQUEST FORM
Thursday, 3 December 2015 - 4:27pm
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 HAE in children with some interesting information of a... Read more
Thursday, 3 December 2015 - 4:00pm
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 seven years old. Before then my mother had spent 14 years with regular stomach cramps, vomiting, and... Read more