Newsletter 2017 #5

NZORD Update Newsletter - December 2017
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Happy Christmas and best wishes for 2018

Welcome to our end of year NZORD Update, and thank you for the excellent feedback you gave us recently on both our Briefing to the new Minister of Health, and the enquiries services we delivered in 2017. It has been our privilege helping you this year, and indeed over the past 17 years.

As we head into the festive season I urge you to register for our Rare Disease Day Symposium on 22 February 2018 at the historic Marion Davis Library on the grounds of Auckland Hospital. A full day of compelling speakers from all areas of the rare disorder sector, and many chances to connect and grow support networks. 

In this edition of NZORD Update you will find out about our poster child for Rare Disease Day 2018, more about our RDD Symposium, news about rare disorders in the media lately and close-down over the holiday period. Have a very relaxing Christmas break and we look forward to supporting and working with you all again in 2018.

Best wishes,
Dr Collette Bromhead

Latest updates from our website

There have been a number of rare disorder cases in the media recently:

What have we been up to?


Briefing to incoming Minister of Health
NZORD recommends three initiatives to benefit people with rare disorders in New Zealand:

1) National Patient Registry
Establishment of a national database that drives improvements in the treatment and care of our patients and ensures resources are allocated to where they are needed. The database would capture and hold information on diagnosis, disease type, treatment and health outcomes for patients throughout New Zealand and would provide data that assists health care providers and planners with their decision making.

2) Orphan Drugs Fund
Establish an Orphan Drugs Fund which sits outside of PHARMAC as we believe that treatment for specific rare disorders can be delivered cost effectively. This fund would allow for drug provision for rare disorders that can be treated in a way that benefits everyone.

3) Folic Acid
Mandatory fortification of flour with folic acid would reduce the preventable incidence of neural tube defects to zero.

Full text of briefing to Minister of Health
NZORD infographic to Minister of Health


Meetings with stakeholders
  • Biogen: re-expedited registration of Spinraza for Spinal Muscular Atrophy in NZ which NZORD supports along with Muscular Dystrophy Association NZ. We hope to see a compassionate access program for SMA type1 infants at Starship hospital in 2018. 
  • NZORD is representing patient interests for the Genomic Health Alliance of New Zealand (GHANZ). GHANZ is a group of health sector stakeholders working to facilitate genomics into routine NZ healthcare.

Introducing our Rare Disease Day Poster Child 2018

Gabrielle from Nelson is seven years old and has Dyskeratosis Congenita, a life-limiting telomere biology disorder.
 

Rare Disease Day takes place around the world on the last day of February each year. It is an opportunity to raise awareness of the over 7,000 rare disorders that combined affect eight percent of New Zealanders.

Gabrielle and her story will feature on the Rare Disease Day poster as well as a giant billboard in Wellington. NZORD will also share her story on our website, with media contacts and through social media.

Fundraising events

Is your support group holding an awareness or fundraising event for Rare Disease Day 2018? Send the details of your event to comms@nzord.org.nz - we will post it on our website and share it with our networks.
 

Enquiries service survey

NZORD's enquiries service aims to provide patients, family members and clinicians with links to information and support for rare disorders.

We recently conducted a survey to measure the satisfaction of our customers with this service:
* 88% of respondents were satisfied or very satisfied with the assistance provided by NZORD;
* 100% of respondents said that were likely or very likely to recommend NZORD to a friend or colleague;
* 83% of respondents found the information provided either very or extremely helpful, while 17% found it somewhat helpful;
* 83% of respondents found staff extremely approachable, while 17% found staff somewhat approachable.

NZORD takes your feedback seriously and will work to address issues that arise. We aim for continuous improvement in all the services we offer to the rare disorder community.
 

Rare Disease Day Symposium 2018

NZORD is hosting a one-day symposium on 22 February 2018 in Auckland to bring together experts in science, treatment and those living with rare disorders. 

Highlights include:
* Evolution of genetics and focusing on conditions that affect the skeleton and brain 
* Re-purposing existing medicines to combat disease 
* How one parent’s journey led to the formation of a disease-specific patient organisation 

Join us to hear from those leading the way in rare diseases.

Full programme and registration

Other links of interest

Labtestsonline.org
A public resource on clinical lab testing from the laboratory professionals who do the testing, this website offers patient education to help healthcare consumers better manage their care.

Christmas close-down

NZORD's national office will close on Thursday 21 December at 5pm, reopening on Monday 8 January at 8am. 

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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