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Collecting data on sufferers of myasthenia gravis

Posted on Friday, 30 May 2014

Dr Blum can confirm that surveys are still being received and contact with Australian sufferers continues to expand. During conversations with Rare Voices (see page 3) it became obvious that formulating registries of sufferers of Rare disease is a priority. Compiling such information is not easy and the survey work may be invaluable in this regard.

Dr Blum also confirmed that a first article for publication regarding malignant thymoma and MG was submitted a few weeks ago. As acceptance of papers usually takes a number of months there is no news as yet in this regard. The quality of life data article is also nearing final stages, and will probably be submitted to an Australian journal.