Contact your MP
Share your experiences and challenges of living with a rare disorder with your local MP. MPs are more accessible than you may think. They need your support, and are, afterall, in parliament to represent their constituents.
Sharing your story directly with the people who run New Zealand is a powerful way to enlighten them to challenges they may not otherwise have been exposed to or considered.
Write an email or letter to your local MP, or request a meeting at their office. Electorate MPs have set times set aside for constituency clinics to make themselve available for their constituents.
Resources to support you
We have a number of general resources about rare disorders which you may find helpful to support you in a meeting with your local MP:
- Rare disorder facts
- Seven priorities to improve health and wellbeing for people living with a rare disorder
- Mind map - example of the complexity of care for someone with a rare disorder
Below are resources on three key priority areas for improving the health and wellbeing of people living with a rare disorder that can help direct your discussions.
Better data collection on rare disorders
- Letter template - data collection
- Fact sheet - The need for data on rare disorders
- Two-page summary - Rare Disorders Insights Report: Pathways Towards Better Health Outcomes
Medicine Access for rare disorders
- Letter template - Improving medicine access
- Fact sheet - Medicine Access in New Zealand
Calling for a Rare Disorder Centre of Excellence in New Zealand
- Letter template - Rare Disorder Centre of Excellence
- Fact sheet - Rare Disorder Centre of Excellence
Please let us know if you plan to meet with your MP and we can support you. Contact us today at enquiries@raredisorders.org.nz.
Members of Parliament - contact details
