Update on arrangements at NZORD

12 June 2015

Today is John Forman's last day as our Executive Director. John has been with NZORD since we started, and I'm sure you would join with me in wishing him all the best. While he is stepping away from management, he will continue to be involved with NZORD's efforts on some discrete projects over the coming few months (including assisting us on the campaign for folic acid fortification and the promotion of a fair regime for determining access to highly specialised medicines). In addition, he will continue to support rare disease patients and their families through his other roles, such as President of ICORD, Trustee of RVA and Chair of LDNZ.

We have begun our search for a Chief Executive who will continue to lead and build NZORD, with the role currently advertised on Seek and TradeMe. Applications close on the 20th of June. Please forward information about this role to anyone in your networks who you think would be a great leader in our mission to inform and support rare disease families, improve their journey through the health and disability system and promote research into rare disorders.

In the interim, we are pleased to announce that Olivia Baddeley will be picking up the helm as the Acting Chief Executive. Olivia was previously an employee of NZORD and left us to complete further studies. She will be well known to many of you and we're thrilled that she is re-joining our team.

We will also soon be joined (remotely) by Daniel Webby who you may know as the founder of the PNH Support Association of NZ. Daniel is going to assist us over the coming months in a support group liaison role, and groups around the country can expect to hear from Daniel soon.

In other news, NZORD has recently refreshed its website - check out nzord.org.nz. Particular thanks to Lyndal, Ben and Valerie who have worked on this project over the past few months. Also to Kelly McQuinan who generously helped with the photography, to everyone she photographed and to the ANZ Staff Foundation for providing crucial funding for this project.

Lucy Elwood
Chair, NZORD