Today we sent an open letter on behalf of the rare disorder community to Jacinda Ardern, as well as other appropriate Ministers. In this letter, we highlighted the fact that people living with uncommon or rare disorders are some of the most vulnerable in our society and need to be considered in the development of support for our communities, from the financial to the psychological.

As we understand the extensive challenges and barriers facing people living with a rare health condition, we wish to provide all the help we can during this uncertain time. We have also written to the senior leadership team at the Ministry of Health to request a designated contact. A specific contact person would ensure we can provide our support groups with key information, as well as having someone within the Ministry to answer specific queries.  

Read the letter to the Prime Minister here

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