The RDNZ team and many people living with a rare disorder met their local MP to share their story and explain why the government must commit to the development of a National Rare Disorder Framework.
Meet your MP
MPs are OUR local representatives, and are obliged to meet with their constituents and listen to the issues that are most important to them.
To help you meet with your MP and be able to share your story and explain why the government must commit to the development of a National Rare Disorder Framework and remind them its time for rare disorders to be taken seriously, RDNZ has created the following resources:
Find your member of Parliament (MP)
MP meeting letter template
Key messages from the campaign
Fair for Rare NZ campaign booklet
Voice of Rare Disorders White Paper 2020: based on the results of our survey
MP letter template_info only (for those who are unable to meet with their MP or would prefer to contact another member of Parliament)
Once the meeting has taken place please inform RDNZ so we can follow up with the MP to provide further information on the campaign and ask what their party will do for this community. Take a photo with the MP if possible, ideally holding the Fair for Rare NZ booklet, and send to RDNZ for use on social media.
If you need any further information or support, please email Kim or call 04 385 1119.