United Nations Event for SMA

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Rt Hon. Helen Clark, who is Board Chair of the Partnership for Maternal, Newborn and Child Health (PMNCH), was one of the special guests, and emphasised the need to not leave those with SMA behind in the global journey towards sustainable development goals. Helen noted that rare diseases affect 300 million people worldwide and a community of this scale demands and deserves global attention.

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Fiona Tolich, advocate for Spinal Muscular Atrophy and a trustee with Patient Voice Aotearoa, shared her powerful journey as a patient living with SMA in New Zealand. Fiona highlighted the importance of introducing early detection via a newborn screening programme, which would provide children with a 70% chance of showing no clinical signs of the disease at all if treated.

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