NZORD Newsletter 2011 #6 – 5 December 2011

Hello everyone,

In this special issue:

An action plan for rare disorders in New Zealand?

  • 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 has received a total of 26 responses from its first call for proposals. NHC is seeking feedback to help determine priorities for its work plan for dealing with these proposals over the next year.
  • This is an opportunity to provide the NHC with indications of support for a better deal for rare disorders, a goal that has been consistently supported by a wide range of rare disease support groups and many interested stakeholder groups for many years.
  • Help get the needs of all rare disorders squarely on the agenda of a major health planning group.
  • Send your expressions of support for this proposal to
  • The deadline for feedback is 5 PM Friday 9 December 2011. Act now to show your support.

The website of the National Health Committee has a summary version of the NZORD submission plus the full text of our proposal.

Please note that the NHC request for feedback also seeks views on the relative merits of all 26 proposals. See the summary of proposals.  The range and complexity of proposals means it is very unlikely that support groups will have the time and expertise to assess these in detail and comment on the relative importance of each of them, but those that are able to respond with a wider perspective in the short time available are encouraged to do so.

Regards, John

John Forman
Executive Director