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:

Template email asking your local MP to join cross-party parliamentary group on rare and undiagnosed disorders

 

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

 Medicine Access for rare disorders

 Calling for a Rare Disorder Centre of Excellence in New Zealand

 

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 

MP meetings