Contact your local MP
Help your local MP understand the challenges of living with a rare disorder
Your local MP is responsible for representing their electorate in the House of Representatives. Your voice and your concerns matter to them.
Writing to your local MP and arranging a meeting with them is a powerful way you can get your voice heard at the highest levels.
You don't have to be an expert on all things related to rare disorders. Just talk to them about the challenges you and your whānau have faced. Tell them about the barriers you have met on your journey trying to access services, care or treatment.
Hearing first hand of someone's personal battle is often the most effective way to get a message across.
Talk to your MP about the urgent need to implement the Rare Disorders Strategy
In July 2024, the Ministry of Health released New Zealand's first Rare Disorders Strategy, outlining the Government's intentions to improve health outcomes for people living with a rare disorder.
There has however been no action to begin implementing the intentions in the Strategy. Without action, the Strategy is not worth the paper it is written on.
Talk to your local MP about why we need improved services for rare disorders urgently.
Use our template letter to help you in requesting a meeting with your MP, and remember to send us a picture from your meeting to help us encourage others to do the same!
Learn more about Rare Disorders NZ's petition calling for Te Whatu Ora - Health NZ to urgently begin planning implementing the Rare Disorders Strategy here.
