On Saturday 29th March we gathered in Adelaide for our third Annual Patient Meeting. Firstly, our President, Fiona Wardman noted the fantastic progress the Patient Group has made over it's first three years. We heard from Dr William Smith, a member of the ASCIA Working Party, Specialist in Clinical Immunology and Allergy at the Royal Adelaide Hospital. He delivered an [...]
On Saturday 21st December Fiona joined patients in Brisbane for lunch at Vangelis Cafe in Hamilton. Six patients, including one patient who was meeting others with HAE outside of her own family for the first time, as well as three carers attended the lunch. As with all MEET UPs, the discussions focus on treatments, medications and sharing experiences and information [...]
On the 13th of October 2013, we held our first skydiving event "Jump For HAE" in Pinjarra, W.A. The day began with some very excited, yet anxious faces, all gathering together patiently waiting for their briefing on just how to jump out of a perfectly good airplane at 8000 feet! Family members, friends, children and [...]
In August our President Fiona Wardman and Board member Olivia Willard attended a seminar in Wellington organised by NZORD, the New Zealand Organisation for Rare Disorders. NZORD brings together a large number of New Zealand support groups for people affected by rare disorders. The seminar was titled Abandoned? Rare Diseases, Specialised Medicines and the Politics [...]
In September following the Australasian Society of Clinical Immunology and Allergy Scientific Meeting in Perth, Fiona and Amanda enjoyed hosting a dinner with a small group of our members from W.A. On October 12th Fiona gathered with a group at the Ming Dragon Restaurant, Mingara Club in Tumbi Umbi N.S.W. Those attending enjoyed a meal and the [...]
The sun was shining as we gathered at Rydges in Brisbane for our second Patient Meeting. The warmth outdoors was matched with warm greetings of hello again or great to meet you. Many people meeting someone else with HAE for the first time and others glad to catch up again with fellow HAE families met [...]
Hi, I’m Jessica Bogoyevitch, I’m 13 years old and I’m the 3rd generation of Hereditary Angioedema sufferers in my family. Even though I’ve only been alive for 13 years I have had my fair share of HAE attacks. Over the years I have learnt that because you have swelling it isn’t the end of the [...]
Finding Comfort and Power in Numbers, the Birth of HAE Australasia. Katherine Wilkinson’s Story of the ASCIA hosted Patient Meeting in 2011 Everyone talks about the importance of people with rare conditions knowing that they’re not the only one affected by the disease. Cindy lives on a cattle station five hours north of Cairns and [...]