Newsletters

NZORD publishes e-newsletters highlighting recent news, issues and events.

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2018

  • #4 – 28 Aug 2018
    Rare is everywhere: Meet William | Fair for rare: Colette's editorial | Updates from our website | Guidance on setting up a support group | NZORD funding update | Running for rare disorders | Queenstown Research Week | Satellite on Rare Brain Diseases | NZORD AGM
  • #3 – 27 Jun 2018
    Rare is Everywhere: Meet Jessica | Greetings from the NZORD Chief Executive | Latest updates from our website | What have we been up to? | PHARMAC community consultation – have your say | Rare is Everywhere: Stories Project | NZORD sponsors prizes for best student presentations
  • #2 – 19 Apr 2018
    Greetings from the NZORD Chief Executive | Latest updates from our website | What have we been up to? | Rare Disease Day update | Rare is Everywhere: Stories Project | Conference and meetings
  • #1 – 8 Feb 2018
    Greetings from the NZORD Chief Executive | Latest updates from our website | Board of Trustees vacancies | Rare Disease Day 2018 | Rare Disease Day 2018 Raffle | Rare Disease Day Symposium 2018 | Support groups – contact details

2017

  • #5 – 13 Dec 2017
    Happy Christmas and best wishes for 2018 | Latest updates from our website | What have we been up to? | Introducing our Rare Disease Day Poster Child 2018 | Fundraising events | Enquiries service survey | Rare Disease Day Symposium 2018 | Christmas close-down
  • #4 – 3 Oct 2017
    CE Editorial | Search for a Poster Child | Latest updates from our Website | What have we been up to? | SWAN NZ update | Fundraising Events | Conferences and Meetings
  • #3 – 1 Jun 2017
    Letitia’s Greetings | Movie Evening - Wellington | Meet Lisa Crawford | SWAN NZ | Winner of Cake Raffle | NZORD website - what's new | Entertainment Books
  • #2 – 3 Apr 2017
    Letitia’s Greetings | Rare Disease Day Cocktail Evening | Rare Disease Day 2017 | SWAN NZ | Orphan Drug Congress – Washington D.C. | NZORD website – what's new? | Entertainment Books
  • #1 – 13 Feb 2017

    Letitia’s Greetings | Rare Disease Day Cocktail Evening | Rare Disease Day 2017 | Pharmac - Rare Diseases Pilot Fund | SWAN NZ | Goodfellow's Symposium | Health Professionals Login

2016

  • #6 – 7 Dec 2016

    Letitia’s Greetings | Rare Disease Day Cocktail Evening - SAVE THE DATE | Rare Disease Day 2017 | Te Reo Translation on NZORD Website | SWAN NZ | NZORD Annual Report | Health Professionals Login

  • #5 – 6 Oct 2016

    Letitia’s Greetings | NZORD Movie Night | Ignite Consultants Team Up with NZORD | Meet the Poster Child for Rare Disease Day 2017 | SWAN NZ | Testimonials from Support Groups | Auckland University Research Study

  • #4 – 5 Aug 2016

    Greetings and exciting changes for NZORD | Meet Vikki Ambrose – NZORD’s Relationship Manager | Ignite Consultants team up with NZORD | Entertainment Books | SWAN NZ | Auckland University Research Study

  • #3 – 4 Jun 2016

    Greetings | Entertainment books | Change in contact details | Folic acid fortification | SWAN NZ | Connecting rare disease patients internationally | University of Auckland study | Williams Syndrome NZ

  • #2 – 4 Apr 2016

    Rare Disease Day 2016 | Rachel Callander – Super Power Baby Project | MoH – Updated Health Strategy | Health Hackathon | Solving Self-Care | ALD Screening | Fundraiser: Entertainment Book Membership | University of Auckland Study seeking participants

  • #1 – 1 Feb 2016

    New Year Greetings | NZORD: Meeting the Community | Rare Disease Day Cocktail Evening | Rare Disease Day poster | Rare Disease Day pins | University of Auckland Study | National Respiratory Achievers Awards

2015

  • #5 – 1 Nov 2015

    Rare Disease Day 2016 - save the date | SFWU meeting | Patient support group survey 2015 | Spark Payroll Giving | NZORD Annual Report | Happy Birthday NZORD | Key dates over the festive season

  • #4 – 1 Sep 2015

    New Chief Executive appointment | New NZORD website | John McGlashan College | Folic Acid update from John Forman | Rare Disease Day 2016 | Support Group project

  • #3 – 12 Jun 2015

    National Health Committee must try harder to understand issues in diagnosis and screening | Hidden cuts to medicine funding. Where did the $180 million go? | Likely funding of orphan drugs in New Zealand | Support NZORD fundraiser with purchase of Entertainment Memberships | Interim management arrangements at NZORD | And it’s au revoir from me

  • #2 – 10 Apr 2015

    Figures show family care payment policy seriously flawed and needs urgent review | Is there room for optimism about progress with the orphan drugs fund? | World Birth Defects Day highlights New Zealand’s lack of progress with prevention of neural tube defects | When is an action plan not an action plan? Carers strategy action plan falters | NZORD submission to the Productivity Commission on more effective social services | Recommended reading – Diagnosis Rare Disease by Denise Crompton

  • #1 – 4 Feb 2015

    Happy New Year from NZORD | Rare Disease Day Movie Evenings | Rare Disease Day posters and pins | Register your Rare Disease Day event

Katie Archer