Check out this powerful podcast featuring Sheralyn and Sue.
"New Zealanders would be shocked to learn how far behind we've fallen," says the head of Rare Disorders New Zealand, Lisa Foster.
Other countries such as Taiwan are 20 years ahead of New Zealand with their support of people with rare diseases, but Foster says that could easily change."
"As Carsen's Mum, I wish I could give more towards the amazing work you do. There are so many things I could say about this experience, there are two which will always stay in my mind - one is how isolating it is to go through this (for me, I wasn't lucky enough to know about the work you do) and secondly, how any of us can be propelled into this world at any moment. As a pregnant Mum, with all healthy scans, never did I think my world would change at 35 weeks pregnant. I hope people can see the importance of this amazing work, and even if they cannot give financially - share the link and page so that awareness can be raised about this important issue. Thank you all again for working towards giving children with rare conditions access to the healthcare, information and support they need."
