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About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

Expert consensus recommendations to improve diagnosis of ATTR amyloidosis with polyneuropathy

Authors David Adams Yukio Ando João Melo Beirão Teresa Coelho Morie A. Gertz Julian D. Gillmore Philip N. Hawkins Isabelle Lousada Ole B. Suhr Giampaolo Merlini Abstract Amyloid transthyretin (ATTR) amyloidosis with polyneuropathy (PN) is a progressive, debilitating, systemic disease wherein transthyretin protein misfolds to form amyloid, which is deposited in the endoneurium. ATTR amyloidosis with PN is the most serious hereditary polyneuropathy [...]

2020-01-14T17:54:26+11:00January 14th, 2020|Latest News.|

Crystal Lobban – My Father’s Story

The upheaval of Amyloidosis - Raising awareness in honour of my Dad My Dad was a very fit, healthy and active man who spent his days farming his beloved Angus cattle herd. The constant maintenance of keeping my parents farming properties in top shape had him out and about [...]

2020-10-07T09:18:23+11:00January 13th, 2020|Patient Experiences|

2nd European meeting for ATTR amyloidosis

Reports from the 2nd European meeting for ATTR amyloidosis for doctors and patients from the NZ ATTR Amyloidosis Patients Association and the Australian ATTR Amyloidosis Alliance representative. This very successful fourday conference was held at the beginning of September in Berlin. Amongst the delegates were Jaime and Aubrey Christmas who [...]

2019-10-17T09:38:09+11:00October 17th, 2019|Latest News.|

2019 International Myeloma Workshop

The International Myeloma Workshop was held in Boston, USA from 12th-15th September 2019. This is a conference attended by >3000 medical professionals every 2 years, where world leaders in the treatment of myeloma and associated disease - such as systemic AL amyloidosis - present and discuss data regarding new [...]

2019-09-22T18:15:56+10:00September 22nd, 2019|Latest News.|

Laurie O’Donnell’s story

Laurie O’Donnell wrote his moving story in October 2017 in the last few weeks of his life. Laurie O’Donnell was the  brother of Vince O’Donnell.  My name is Laurie O’Donnell.   I am 65 years of age and three and a half years ago after having neuropathy problems (peripheral nerve [...]

2020-03-29T20:42:30+11:00July 22nd, 2019|Patient Experiences|

Ken’s Story – An occipital stroke led to a diagnosis of AL amyloidosis

In September 2019, after a couple of days being out of sorts, my then 76 year old husband Ken suffered an occipital stroke . We were fortunately at the cardiologist at the time receiving the results of an echo cardiogram. The cardiologist immediately had Ken admitted into St Vincent's [...]

2022-02-21T16:25:31+11:00February 17th, 2017|Patient Experiences|
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