The Muscular Dystrophy Association of New Zealand Inc. (MDANZ) is a member-led organisation established by New Zealanders with lived experience of neuromuscular conditions.
We began in the late 1950’s as a support group for families affected by muscular dystrophy. Since then, we have broadened our scope to include many other neuromuscular conditions and have become a leading source of information and support to our community.
Condition Profile
Metabolic Myopathies: They are rare, highly variable in how they present, and often misdiagnosed early in the disease course - but few conditions rival the interest that metabolic myopathies elicit, writes Shanthi Ameratunga.
Member Profile
When Freda Evans was diagnosed with Pompe disease more than 30 years ago she decided then and there that the condition would not rule her life. Anything people said she couldn’t do, she has done – including travelling the world alone.
Noticeboard
"Don’t ever give up" - Lara Elliott
19/02/2021Having a rare disease hasn’t held Lara Elliott back from making the most of her life and fulfilling her dream to become a mother. She shares her story with Melanie Louden ahead of Rare Disease Day on February 28, 2021.
Rare disease teaches Louise to be kinder to herself and others
9/02/2021From a GP who said it was all in her head, to facing her fears, Louise Davy is determined not to let the rare disease she has limit her. She shares her story with Melanie Louden ahead of Rare Disease Day on February 28, 2021.
Rolling with the punches and dancing to her own trumpet
12/01/2021When Freda Evans was diagnosed with Pompe disease more than 30 years ago she decided then and there that the condition would not rule her life. Anything people said she couldn’t do, she has done – including travelling the world alone.
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