2013 Workshop – Rare Disease Day Workshop

The half day workshop was held on Rare Disease Day, 28th February, at the Rydges hotel, Wellington.

Approximately 65 people attended, including rare disease patients, families and leaders, health professionals, academics, lawyers and media.

iew an outline of the day’s programme.

Workshop report

There were nine powerful ‘testimonies’ from diverse rare disease patients and family members, about their experiences and difficulties gaining access to highly specialised medicines.

The support group perspectives from MDA and LDNZ reiterated the difficulties with orphan medicine access, and stated they will do all they can to support all rare disease communities, in order to achieve fair access to medicines.

The legal, academic and policy viewpoints, clearly identified and reiterated the omission of fairness and equity in Pharmac’s policy and decisions regarding orphan drug access.  

A consensus was found and signaled a call for an orphan drug access policy to be implemented by the government, to facilitate fair access to highly specialised medicines.

The NZORD press release from the day can be found here.

Videos of presentations from the day can be seen at the NZORD YouTube channel.

Katie Archer