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 insightful overview of Hereditary Angioedema and the current treatments available.
Our organisation’s Medical Advisor, Prof. Connie Katelaris then spoke about current and upcoming clinical trials and the need for a Patient Registry. A Registry can potentially enable us to help ourselves and new generations of HAE Patients who follow by collecting valuable data for researchers who work in the field of HAE.
Merryn Netting a Practicing Dietician then spoke of the wide ranging health benefits a healthy balanced diet can provide.
A fine young man, Ryan Bogoyevitch delivered an inspiring presentation on how HAE impacts on his life, his school, his friendships and his family. He spoke of not only what makes him feel bad, but how knowledge of his condition, support and understanding really helps him in school and daily life.
Our final speaker of the day was Cameron Milliner, Associate Director Government Relations, Shire. He spoke of the importance of engaging our patient community as well as government representatives with our issues and advocacy needs as a Patient Group.
The day was another opportunity for members of the HAE family to share stories and promote support and care for each other. If you couldn’t attend this years gathering make 2015 a priority, and bring your family to meet our local HAE family.