Rare Disorders NZ invited to present at an International United Nations event

Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease.

The event has been initiated by the Permanent Mission of Ukraine to the United Nations and will be attended by senior UN representatives, including the President of the United Nations General Assembly, the President of ECOSOC and Rt Hon. Helen Clark; currently the President of the Executive Board of UNICEF. Other stakeholders participating include representatives of diplomatic missions in New York, major UN entities such as UNICEF, WHO, UNDP and UNFPA, pharmaceutical company representatives, patient advocacy groups and NGOs.

“We are thrilled to have been invited to speak at this event to raise awareness among UN member states and dignitaries of this devastating disorder and voice our concerns for the discrepancies in access to treatment for people living with SMA,” says Lisa Foster, Chief Executive of Rare Disorders NZ. “The opportunity to educate distinguished world leaders about the importance of early detection and responsive therapy to transform lives is amazing, although the reality for many countries, including New Zealand, is there is no current access to treatment.”

Spinal muscular atrophy (SMA) is a genetic disorder that affects the control of muscle movement and causes the muscles to waste away. Worldwide approximately 1 out of every 10,000 children is born with SMA. The most severe type affects up to 60% of children with this disease and has a 95% death rate before the age of two for children who develop it early. The drug Spinraza has proven to be very effective in improving survival and motor functions, and is currently funded in 56 countries; New Zealand is not one of them. Since Spinraza came onto the world stage as a highly effective treatment for SMA, two other treatments have also been developed and are being accessed in different nations across the globe, although again, not in New Zealand. There are approximately 75 New Zealander’s living with SMA. 

Fiona Tolich of Patient Voice Aotearoa has been fighting for Spinraza to be funded in New Zealand for years and will also be speaking at the event.

“I am incredibly honoured to be given the opportunity to speak at the highest level about the fundamental issues that exist for the SMA population on the world’s most powerful diplomatic stage,” says Tolich. “Domestically I have taken a human rights case, arguing for the right to health and against discrimination. Now is the chance to educate the international community about the desperate lengths we are having to go to in New Zealand to defend the right to life for those with SMA.”

“New Zealand boasts a long and proud history of advocating for humanitarian rights, and for being a kind and compassionate society. It is time this kindness was extended to New Zealanders living with rare disorders like SMA,” Tolich says.

The event will be streamed live on the Facebook page of the Permanent Mission of Ukraine to the United Nations on October 29th at 6:15 am (NZ time).

ENDS.