Newsletter 2017 #4

NZORD Update Newsletter - October 2017
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In this issue:
  1. CE Editorial
  2. Search for a Poster Child
  3. Latest updates from our Website
  4. What have we been up to?
  5. SWAN NZ update
  6. Fundraising Events
  7. Conferences and Meetings

CE Editorial

Welcome to the new look NZORD Update Newsletter for October.
Spring is in the air and along with it, changes are underway at NZORD!

The biggest changes have been in our team with three new staff since July. It was my privilege to take on the leadership of NZORD in August and I have enjoyed coming up to speed with all the great work that is underway in the organisation. However, I am also looking at how I can bring my background in diagnostic testing and clinical research to the fore to add value to the organisation and all our stakeholders.

Two other staff members have recently joined NZORD. Lisa Chapman, our Relationship Manager, has been busy meeting with communities and supporting families through our enquiries line. Our new Fundraising and Communications Manager, Amy Watson, brings communications experience from IHC and is committed to sharing the stories of our people.

The team at NZORD wish you all the best for spring 2017.

Dr Collette Bromhead
Chief Executive

Search for a Poster Child

Check out this photo of Adam, this year's poster child for Rare Disease Day, hanging out with the huge billboard version of himself!

The search is on for a child to be the face of New Zealand Rare Disease Day 2018. Please email if you would like to find out more.

Latest updates from our Website

  1. MOH’s ‘Transforming Respite Care’ - the new strategy for carer respite designed to bring choice, control and flexibility
  2. Cystic Fibrosis Drug funding – Sunday Star Times interview with our CE, Dr Collette Bromhead  
  3. Pharmac RFP on therapy for Gaucher syndrome

What have we been up to?

NZORD presence at GP conferences
Relationship Manager Lisa Crawford has recently attended both the Dunedin and Christchurch GP conferences which were excellent opportunities to raise the profile of our tools for doctors to help their patients with rare disorders. 

There were over 500 attendees at the Conference for General Practice (Quality Symposium) in Dunedin along with a range of exhibitors. The theme of this conference was ‘Whakamanawatia: Working together we can do great things.’ This offered an opportunity to raise the profile of NZORD through many networking opportunities.

At the South GP Conference and Medical Exhibition in Christchurch there was a political buzz with panel discussions including both Jonathan Coleman and David Clark on their policies for health. NZORD is keeping an eye on the outcome of the election and the impact any political changes may have for patients with rare disorders.

SWAN NZ Update

SWAN New Zealand is a support group for New Zealand patients and families affected by an undiagnosed genetic condition – a ‘syndrome without a name’. SWAN NZ has been established by the New Zealand Organisation for Rare Disorders (NZORD).

If you would like to join SWAN NZ, please visit the website and fill in the membership form, SWAN NZ is free to join and is welcoming new members. Visit the website for links to the Twitter and Facebook pages also. 

There has also been a closed Facebook page created for members, if you would like to join this group please email with a link to your Facebook profile and you will be added to the group. Any posts or discussions which take place on this page will only be seen by the members of this group.

Fundraising Events

Rare Disease Day
NZORD is working on a fundraiser for Rare Disease Day involving exquisite prizes such as dinner for two at the renowned Sugar Club Restaurant or lunch for four on Waiheke Island. Watch this space for more details on how you can be in to win!

Entertainment Books
NZORD is pleased to be fundraising with Entertainment™ again this year. Order your 2017/2018 Entertainment™ Books and Entertainment™ Digital Memberships from us today, and 20 percent of the proceeds contribute towards helping NZORD with our operating costs!

Order your Entertainment™ Book now

Conferences and Meetings

  • Debra International Congress 2017
    Wellington, New Zealand, 24-26 November.

    This is the first time the DEBRA International Congress on the Epidermolysis Bullosa rare genetic skin conditions has been held in the Asia Pacific region, and therefore represents a unique opportunity for international networking on these conditions. 

  • Rare Disease Day Symposium 2018

    Next year NZORD will host a one-day symposium on 22 February 2018 at the Ernest & Marion Davis Lecture Hall, Auckland City Hospital. Entitled 'New Horizons: The New Zealand Rare Disease Day Symposium', the aim is to bring together clinicians and people living with rare disorders to share evidence and experience – working together for the best health gains.

    Please save the date. Further details will be announced in the next newsletter.

Connect with NZORD via Facebook
Visit the NZORD Website

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New Zealand Organisation for Rare Disorders · PO Box 9514 · Marion Square · Wellington, 6141 · New Zealand

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