Newsletter 2018 #3

NZORD Newsletter - June 2018
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Rare is everywhere: meet Jessica

"I wasn’t disappointed, I was lost and had no idea what all this meant - would Jessica be able to walk or talk?"

Greetings from the NZORD Chief Executive

I am reminded every day of the huge challenges faced by our rare disorder community and of the enormous need for solutions, progress and action. Thank you to all the amazing people who have shared their stories through our Stories Project – they are beautiful and painful and empowering all at once. I encourage everyone to read these experiences and to contribute your own stories as patients, parents, carers, researchers, clinicians, friends or neighbours.

NZORD has been actively meeting with politicians, PHARMAC and other influencers pushing for answers to the big questions: Where is NZ’s policy on rare disorders? And where is the funding at for rare disorder medicines? Since NZORD continues to be blocked from meeting the Health Minister, Hon David Clark, I can only surmise that he is embarrassed by what his Ministry has done for patients with rare disorders – nothing.

We continue to negotiate with the Ministry of Health for our all-important core funding and see the value that they place on NZORD, as the only umbrella organisation for all rare diseases in NZ, as a reflection of the value they place on rare disorder patients.

In the meantime, please check out our new webpage with guidance on setting up support groups – there's valuable information for existing support groups as well.

Ngā mihi,
Dr Collette Bromhead

Latest updates from our website 

  • Featured rare disease: Homocystinuria
  • New Zealand infants suffering from a rare neuromuscular condition  (Spinal Muscular Atrophy) may soon be eligible for compassionate access to life-changing new medicine.
    Treatment for families battling a devastating rare disease
  • "If groups like NZORD begin to disappear, so does the rare patient's voice, if they lose their voices, they lose their lives.”
    Katie Stevens, Executive Director, DC Outreach, Inc.
    International support for NZORD
  • “No other organisation does what we do for Kiwis with rare disease in need. Such people often express severe mental distress related to feeling unseen, disregarded and isolated, and the services NZORD offers is of immeasurable value to them.”
    Dear Prime Minister Ardern

What have we been up to?

Mental Health Inquiry
"I grew up a normal kid so it is very frustrating for me now because I can compare things and contemplate all I’m missing out on." Doug

Rare disease patients and carers are three times more likely to suffer depression than the general population. Read NZORD's submission to the Mental Health Inquiry

A recent UK report also highlights the huge impact on emotional wellbeing and mental health of living with a rare disease.  
Support group directory audit and update
Newly diagnosed patients and carers can feel isolated and overwhelmed. Support groups share information, knowledge and offer support. NZORD has a directory of more than 100 support groups around New Zealand (and internationally) which have recently been audited and updated. If you run a support group and your contact details have changed please tell us so we can update our directory. 

Find a support group
Guidance on setting up a rare disorder support group

PHARMAC community consultation – have your say

PHARMAC is visiting towns across New Zealand to get feedback on the role of consumer voice in the work that they do.

There is also a consultation document available for those who are unable to attend a meeting. NZORD is preparing a response to this consultation highlighting the ways that PHARMAC's processes exclude and discriminate against people with rare disorders.

Rare is everywhere: stories project

Meet some of the 377,000 people living with a rare disorder in New Zealand.

Share your personal story here.

NZORD sponsors prizes for best student presentations

To recognise and encourage future rare disease researchers, NZORD will this year sponsor prizes for the best student presentations at the Queenstown Satellite Meeting on Rare Brain Diseases.

There are two prizes: Best Student Talk ($250) and Best Student Poster Presentation ($250).

The presentations will be judged by Dr Stephanie Hughes (University of Otago) and Dr Collette Bromhead. Winners will be announced at the end of the Satellite Meeting on 31 August.

If you have any feedback or questions about this newsletter please get in touch - email Amy or 04 385 1119.
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New Zealand Organisation for Rare Disorders · PO Box 9514 · Marion Square · Wellington, 6141 · New Zealand

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