Newsletter 2019 #2

NZORD Newsletter - April 2019
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Rare is everywhere: meet Jarod

"It would be great if doctors had more understanding towards parents."

Fair for Rare: a word from Gill

When I was a student at Auckland University my mother was Public Relations Officer for CCS. She encouraged me to volunteer, and in time introduced the Access Parking symbol, and helped to establish the Murray Halberg and Laura Fergusson Trusts, and the first telethons. I can see her clearly, typing newsletters late at night to help to share the stories of those who were too often unheard, of their courage and determination.
 
Later I had the chance at Victoria in Wellington to combine student health, counselling, learning support, careers, kohanga reo, accommodation and support for Students with Disabilities, with specific services for Maori and Pacific students, and to develop Vic Volunteers - students who supported students with a range of special needs.
 
Since then I’ve had opportunities to work in challenging, rewarding areas, and to advocate for Human Rights, including the highest attainable standard of health for all - here, with  governments around the world, and the UN. For me, coming to NZORD to work with you for a rare diseases framework, action plan and funding, feels like coming home.

“Where after all do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world... the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”
(Eleanor Roosevelt 1948)
 
This was the basis for the Universal Declaration of Human Rights. I look forward to working with you and NZORD’s small hardworking team to make this vision reality.

Best wishes,
Gill Greer

Updates from our website

Education Session

Almost 40 people from around the country attended our Education Session in Wellington in February.  Attendees heard presentations from PHARMAC and the Carers Alliance, and worked with life coach Tracey Hancock to address some of the challenges faced by those with rare disorders. Attendees appreciated the chance to network with other patients and carers living with rare disease. One attendee commented "I felt normal, thank you."

After the workshop, Tracey created a video with three tips for building resilience and being an advocate warrior.

Rare Disease Day Awards

Five outstanding New Zealanders were recognised for being rare disease champions in our community with a new award. The Rare Disease Day Awards were hosted by Her Excellency the Rt Hon Dame Patsy Reddy, Governor-General of New Zealand and Patron of NZORD on Thursday 28 February at Government House.

The five recipients of the Rare Disease Day Awards 2019:

· LIFETIME ADVOCACY AWARD – Lady Gillian Deane

· RESEARCH AWARD – Associate Professor Mervyn Merrilees

· HEALTH PROFESSIONAL AWARD – Dr Dianne Webster

· PATIENT ADVOCACY AND SUPPORT AWARD – Allyson Lock, Pompe Network

· FUTURE CHAMPION AWARD – Brittany Vining

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

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