NZORD Newsletter 2015 #4 – September 2015
New Chief Executive appointment
NZORD are very happy to announce the appointment of Letitia O’Dwyer to the role of Chief Executive. Letitia has over 20 years’ experience in the health sector - specifically around; introducing new health technologies, improving access to pharmaceuticals, initiating imaging and diagnostic trials, and establishing international healthcare networks. She holds a Bachelor of Science, a Post Graduate Diploma in Business and a Masters in Health Management from the University of Auckland. Letitia is dedicated to improving healthcare outcomes in New Zealand via research, and facilitating the connection of decision makers in the healthcare/patient pathway. She lives in central Wellington with her partner Scott, and their blended family of 5.
We would like to thank Olivia Baddeley for stepping up to the role of Acting Chief Executive whilst the recruitment process was underway. Olivia’s contribution and knowledge is invaluable and appreciated by the entire NZORD team, we are extremely fortunate that Olivia will stay on with NZORD and would like to congratulate her on her appointment to the role of Senior Adviser.
New NZORD website
NZORD’s new website was launched at the end of May, hopefully many of you have had a chance to check out the website, which the team are very proud of. It is a work in progress with lots of ideas going forward on how to keep the site fresh and informative.
The photographs on the site feature some families from our support groups, the photos bring a fresh look to the website and create lots of visual interest. The photography was carried out by Kelly McQuinlan and her husband who are based in Auckland.
If anyone has any feedback on the site, please do not hesitate to get in touch with Lyndal Bremer on
John McGlashan College
Recently, the NZORD team received a call from Angela Thomsen at John McGlashan College in Dunedin, which is a boy’s secondary school for year’s 7 to 13. Angela had phoned to tell the team that earlier this year the school ran a reading fundraiser to encourage reading in years 7 to 10 and that NZORD was the school's chosen charity. The students raised over $3,000 which is an outstanding effort. The NZORD team were blown away by the news and amazed at the amount the students raised for NZORD. Let’s hope that the boys are enjoying their reading and that they are reading more than ever!
The NZORD team cannot thank the boys and the staff at John McGlashan College enough, to have chosen NZORD as their charity is very humbling and hugely appreciated.
Folic Acid update from John Forman
Since John left NZORD in June 2015, he has been kept busy working on the Folic Acid debate. John has attended meetings and reported back that the baking industry have just met targets of 25% of packaged bread being fortified – so certainly room for improvement.
The target for December 2016 is to have 50% of packaged bread fortified. However, some factors are hampering these efforts, many folic acid factories in China have been closed by emission standard enforcement, and the price of folic acid has increased substantially.
Despite these setbacks, efforts are continuing on bread fortification. It is hoped that solid data in the coming months from the NZ Birth Defects registry will provide firm figures to discuss rather than estimates.
Rare Disease Day 2016
This year Rare Disease Day is happening on a leap year, which makes it an extra special day. Make sure you block out Monday 29 February in your diaries. The team at NZORD are beginning to think of how we will mark the day, the website has been updated so if you are super organised, feel free to register your event now. If you have any photos from events held last year, it would be great to add these to the website, please email these to firstname.lastname@example.org
Support Group project
Many support groups will be hearing from NZORD over the next month or two. Daniel Webby who founded the PNH support group has been contracted to the role of Support Group Liaison. Daniel’s project is designed to better understand the challenges and opportunities facing rare disease communities here in New Zealand.
NZORD would appreciate your participation in the survey, to do so please click on this link.
In the interim if anyone would like to contact Daniel, his email is: Daniel.email@example.com