Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Last night RDNZ Chief Executive Lisa Foster attended the annual Medicines NZ dinner at Parliament. This was an opportunity to meet with policymakers and ensure the collective voice of rare disorders is included within the solutions proposed to address medicine inequity.
When things go really wrong they are the last line of defence for the most vulnerable, but a survey of almost 700 family carers shows how invisible and unsupported these New Zealanders have been during Covid-19.
What this global pandemic has shown is that “the virus does not discriminate, but its impacts do” Antonio Guterres, United Nations Secretary General
Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder.