Rare Disorders NZ will be launching the White Paper based on the Voice of Rare Disorders Survey 2023 - the largest-ever survey of patient-reported outcomes for people with rare disorders in New Zealand.
Keynote speaker - Dr. Gareth Baynam, clincial genetist and Medical Director of the Rare Care Centre, Clinical Centre of Expertise for Rare and Undiagnosed Diseases in Western Australia.
Where: Grand Hall, Parliament
When: 28 February 2024, 5:30 - 7:30 PM
Thank you to Medicines NZ, HealthiNZ, Alexion, BioMarin for supporting the production and launch of this white paper.