Changing of the guard at the NZ Organisation for Rare Disorders

9 May 2017

NZORD’s Chief Executive Letitia O’Dwyer will be leaving the organisation at the end of this month to take up the role of Chief Executive of the Asthma and Respiratory Foundation NZ.

NZORD Chairperson Chris Higgins said that “Letitia will leave big shoes to fill. During her time as NZORD’s Chief Executive she has achieved a lot in the relatively short time she’s been with us.”

“Letitia’s high energy and drive has seen the organisation improve its financial position which in turn has allowed us to provide additional services for our stakeholders” said Mr Higgins.

“These include the Health Professional login initiative launched six months ago, and employment of a new dedicated relationship manager to inform rare disease support groups about the latest information and research, and to facilitate our participation in international and national networks.”

“The Health Professional login is a joint initiative developed by NZORD and the Royal College of General Practitioners in response to feedback from rare disorder support groups. It’s an online specialist directory tool which provides GPs with a link to an easy to navigate encyclopaedia of rare disorders called Orphanet, and the ability to order informative literature for their patients”.

Mr Higgins said that while NZORD is sad to see Letitia go, the Board and staff wish Letitia all the best in her new role leading the Asthma and Respiratory Foundation NZ.

In the interim the first point of contact at NZORD will be Lyndal Bremer (Fundraising and Communications Manager) and Chris Higgins (Chairperson and Acting CE)

The CE position is currently being advertised, for more information please visit: