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New Zealand Organisation for Rare Disorders

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Phone: +64 4 471 2226


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Rare Disease Day Seminar – 28 February 2013

Orphan drug access in the spotlight

NZORD invited all stakeholders with an interest in medicine access issues to attend a seminar on the morning of Thursday 28 February 2013 – Rare Disease Day – to examine aspects of medicine access in New Zealand, and in particular the problems that still exist with access to specialised medicines for rare “orphan” diseases.

Thursday 28 February, Function room, Rydges Hotel, Featherston St, Wellington

9am – coffee and snack on arrival.
9.30am – Seminar commences.

  • Introduction and welcome – John Forman, NZORD. 5 minutes.
  • Patient perspectives – 9 x 5 minute presentations.
  • Support group perspectives – Chris Higgins, MDANZ. Jenny Noble, LDNZ. 2 x 8 minutes.
  • Legal perspectives – Lucy Elwood, Lawyer. 15 minutes.
  • Academic perspectives – Greg Coyle, PhD thesis on Pharmac exceptional circumstances. 20 minutes.
  • Policy perspectives and Summary– John Forman, NZORD. 10 minutes.
  • Open discussion and questions from the floor – 25 minutes.

11.45am – Seminar ends.

View videos of the speakers on Youtube. 

Important Notes:

The Scottish government has recently announced a special fund to ensure equitable access to medication for rare disease patients. They have noted that the availability of drugs through Individual Patient treatment Requests (IPTR) is an “inequitable process”, wherein needs of the “more vulnerable” population such as rare disease patients are not addressed. The parallel with the current situation in NZ is striking. Scotland joins Australia, the rest of the UK, and Canada in implementing or announcing new policies to ensure equity for rare diseases, helping cement the widespread access to orphan drugs enjoyed in most developed nations. See

Here is the link to Greg Coyle’s PhD thesis: How does the operation of PHARMAC’s ‘Community Exceptional Circumstances’ policy align with the distributive justice principles of fairness and equity as described by John Rawls and Amartya Sen?

Regards, John