Oct 28, 2021, 11:44 AM


 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.


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