Time to Fund Fabry - Campaign Update

Tue Oct. 1st 2024

Kia ora koutou Fabry friends.

We apologise that a campaign update has been so slow in arriving in your inbox, but it has been quiet as we await a response from Pharmac to our letter while also trying to break into the news cycle with our story.

But we have now had a response!

Paula Bennett (Chair of Pharmac) did not respond directly, but we did hear from Geraldine MacGibbon, Director, Pharmaceuticals. As you might expect, Geraldine did not provide us with any information that is not already public. However she did suggest she would be willing to host a meeting with our group. Liz has responded to this suggestion with a ‘yes, let’s meet’.

This will likely be online, and once we have a date we will send invitations out for you to attend. We’re also working on key talking points for this meeting. If you wish to contribute and speak on the day please let us know.

Getting our story told with your help

We need your help in 2 big ways!

Share your story with us for the website, or support a person you know with Fabry to do the same. See the amazing examples on the Fabry Australia website. (We have also shared some on our private Facebook page).

Be willing to share your story, along with some of our pre-prepared talking points, with a reporter or journalist. We’ll set it up, brief both them and you, and provide support.

This is not only about saving lives, it’s about improving quality of life for dozens of Kiwis, ensuring they receive the care they need right here in NZ, without having to move overseas or suffer further deterioration of their health.

See https://fabry.org.nz/news/our-... for suggestions.