We are the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them.
Our enquiries line, website and support group networks allow patients to access knowledge and support quickly and we also advocate for those who have no available group or fall through the gaps and offer direct support to navigate the health system.
Our collective voice allows us to advocate for policy and system change to incorporate the unmet needs of this community.
We align with and support the call for robust and enforceable accessibility legislation in New Zealand.