An action plan for rare diseases in New Zealand?

NZORD’s submission to the National Health Committee – November 2011

NZORD has proposed that the National Health Committee supports a rare disorders action plan for New Zealand. The NHC has been given new responsibilities to help make improvements to health and disability services and our submission was provided to them following their first call for proposals. Ours is one of 26 responses received by the NHC and which it will consider in the early part of 2012 to help determine priorities for its work plan.

This is the first opportunity for us to have this need formally considered within our health system. Our goal of a better deal for rare disorders has been consistently supported by a wide range of rare disease support groups and many interested stakeholder groups for many years.

The website of the National Health Committee has a summary version of the NZORD submission. Follow this link for the full text of our proposal in pdf format.

John Forman
Executive Director