Newsletter 2017 #3

NZORD Newsletter - June 2017
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Letitia’s Greetings


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.


Best wishes
Letitia

Movie Evening - Wellington

NZORD has managed to secure a special screening of the movie ‘Gleason’.

The hit documentary from the 2016 Sundance Film Festival goes inside the life of Steve Gleason, the former New Orleans Saints defensive back who, at the age of 34, was diagnosed with Amyotrophic lateral sclerosis (ALS) and given a life expectancy of two to five years. (ALS, commonly known as Lou Gehrig’s disease and outside the US as Motor Neuron Disease (MND) or Charcot’s Disease, is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function). Weeks later, Gleason found out his wife Michel, was expecting their first child. 

A video journal that began as a gift for his unborn son expands to chronicle Steve's determination to get his relationships in order, build a foundation to provide other ALS patients with purpose, and adapt to his declining physical condition - utilising medical technologies that offer the means to live as fully as possible.

This is a unique opportunity to see this film, it isn't being released to the NZ public.

Details for the screening are:

Penthouse Cinema
Brooklyn, Wellington
Tuesday 4 July
8pm

Tickets $20

To avoid missing out, book your tickets by emailing: comms@nzord.org.nz.

See the Gleason movie trailer

Meet Lisa Crawford

NZORD is delighted to announce the appointment of Lisa Crawford to the role of Relationship Manager. Lisa joins the team on 6 June, and the next day is off to Rotorua to represent the organization at the General Practice Conference and Medical Exhibition (GP CME).

Lisa holds a degree in BSc (Hons) in biomedical science, with experience as a research scientist in the field of genetics. Lisa also holds a Diploma in Anatomy, Physiology and Massage along with a certificate in Psychology and Diploma in Herbal studies, she has worked in the New Zealand industry for over ten years. The range of this experience covers assessment and facilitating care packages for older people, employment and education support in the mental health area and leading a team of offering crisis respite for youth. Lisa was also part of the Be Leadership graduates in 2014.

She is wholeheartedly committed to offering effective support to others in their time of need.

SWAN NZ

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).

SWAN NZ has now been running for ten months, we have 20 members and would like to hear from anyone else who would like to join.

If anyone is interested in organising a catch up with other SWAN NZ members, please email swannz@nzord.org.nz and we can arrange to put you in touch with other members who may be living close by.

A SWAN NZ Twitter account is now up and running, check it out @swannz_nz.

To visit the SWAN NZ Facebook page, head to www.facebook.com/SWANNZ/.

We would love some more patient stories and photos to add to the website, sharing your story can be a huge help to other people out there struggling without a diagnosis.


If you would like to join SWAN NZ, please visit the recently launched website www.swannz.org.nz and fill in the membership form. SWAN NZ is free to join and is welcoming new members.

Winner of the Cake Raffle

A special thank you to Cathy Tia who donated the amazing chocolate cake that was raffled to raise funds for NZORD.  The response was amazing and the money raised will go toward NZORD's general operating costs.

The raffle was drawn Friday 26 May.  The winner of the amazing chocolate cake was Sarah Warmington from Wellington.

Please see below photos of Mary and Dave (amazing cake creators), Mary and Cathy (incredible organiser of the raffle) and Sarah and her family with their decadent looking cake prize.

Thank you to everyone who bought tickets, your support is hugely appreciated.


Mary and Dave

Mary and Cathy

Sarah and her family

NZORD website - what's new?

The new featured rare disorder on the NZORD website is Pompe Disease. This has now been added to the NZORD website.

If you have a moment, check out this out on the home page www.nzord.org.nz. If you have any feedback, please do let the NZORD team know by emailing enquiries@nzord.org.nz.

Entertainment Books

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

Order your new Entertainment™ Book or Entertainment™ Digital Membership by clicking on the link below:

www.entertainmentbook.co.nz/orderbooks/921v787

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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