Welcome to the NZORD newsletter for June.
At the end of April I attended the World Orphan Drug Congress in Washington D.C.
It was fantastic to be invited to attend this event as a guest speaker and present on ‘Changing the paradigm of access, recognition and collaboration of rare disorders in New Zealand’. The objective of this talk was to highlight some of the key initiatives NZORD has implemented, and to communicate what we are still hoping to achieve.
NZORD is committed to showcasing that there is a need to address the burden of rare disorders in New Zealand, and that we will assist all involved to come up with innovative ways that facilitate and improve this. Our focus on assisting health professionals in the primary care space is a good example of a concrete outcome that facilitates sharing of information amongst those caring for people living with a rare disorder.
Our strong commitment to raising the profile of ALL rare disorders in New Zealand has enabled NZORD to positively meet with key stakeholders to discuss our support for a rare disorder registry, clearly identified clinical pathways to navigate the often-confusing healthcare system, and an in-siloed approach to funding which factors in the overall 'burden' of rare disorders.
On another note, and as some of you may have heard, I am leaving NZORD at the end of May.
I am extremely proud of what NZORD has achieved as a team during my time here as Chief Executive and I know that I leave NZORD in very capable hands with our interim NZORD Manager Lyndal Bremer taking on the day to day running of NZORD, and Chris Higgins NZORD's Chair as acting Chief Executive. A new Chief Executive is expected to be announced at the end of June.
I would like to wish you all the very best and thank you for your support during my time here at NZORD.
Special thanks to our NZORD team, the board, and most importantly the NZ rare disorder community for sharing their stories.