News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


NZORD Newsletter 2013 #1 - 28 January 2013

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – Rare Disease Day is one month away. Are your plans in place?

2 – Access to Medicines Coalition is renewing its activity. A chance for more groups to get involved.

3 – Help sought from Ombudsman’s Office over Pharmac’s rejection of funding under exceptional circumstances.

4 – NZORD’s research institute broadens activities and collaborations.
5 – Important decision on carer payments expected in February.

************

1 – Rare Disease Day is one month away. Are your plans in place?
There are plenty of ideas on the dedicated website www.rarediseaseday.org.nz for rare disease groups, even the smallest, to raise awareness about their condition and raise funds for their group’s activities. Posters can be downloaded from the site. Detailed guidance is provided on running small events in schools, workplaces, clubs, etc. Promote the Rare Gems™ theme on Thursday 28 February. Options include donating to NZORD’s research institute for those who don’t have a connection to a particular support group for any donations to go to.

New Zealand Rare Disease Day is our part in an international observance of Rare Disease Day, and momentum is building here and across the globe to draw attention to the needs of those whose conditions are often neglected in health and disability support systems.

2 – Access to Medicines Coalition is renewing its activity. A chance for more groups to get involved.
In 2005 the Access to Medicines Coalition was formed by 26 support groups, promoting the need for a medicine strategy to improve decision processes regarding medicine funding, and to ensure New Zealanders achieved improved access to prescription medicines. Despite an improved budget allocation in 2008 and the following two years for medicines managed by Pharmac, those modest improvements to subsidised medicines are now overshadowed by a significant cut of $30 Million from the community Pharmaceuticals Budget which occurred in the May 2012 budget. In addition, those past increases did not solve the problem of heavily restricted access to new medicines in general, and to therapies for very rare diseases in particular.

The working party of the ATM coalition has decided to refresh its activities with an open invitation to all support groups to sign on for involvement. A briefing of all interested groups will take place late in February by phone conference. Signal your interest in participating in the Coalition with an email to enquiries@nzord.org.nz.

3 – Help sought from Ombudsman’s Office over Pharmac’s rejection of funding under exceptional circumstances.
NZORD has been working closely with the Muscular Dystrophy Association of NZ, and Lysosomal Diseases NZ, to work through difficulties gaining access to specialised medicines for some very rare conditions affecting just a handful of NZ patients. We are very concerned that Pharmac’s new exceptional circumstances policy (NPPA) has tightened criteria and restricted access, despite the intention clearly signalled by government Ministers that such access should be improved under the new policy.

After many years of being frustrated by Pharmac’s narrow approach to this issue, we have sought the help of the Ombudsman’s Office to enquire into the fairness of Pharmac’s process and decisions. A decision by the Ombudsman is expected very soon.

4 – NZORD’s research institute broadens activities and collaborations.
NZORD established the NZ Institute for Rare Disease Research Ltd as a charitable company to help connect patients, families and support groups for rare disorders, with opportunities to contribute to and support research efforts into rare diseases. Our new website for NZIRDR has a directory of NZ rare disease researchers, a list of animal models of disease found in the farm animal population, and information about a rare disease biobank we are developing. In addition, NZIRDR is collaborating with international groups about research policy and priorities, and is actively exploring some specific rare disease research projects with local and international partners.

If your group is interested in pursuing research collaborations with NZ or international researchers, NZIRDR may be a source of ideas and possible connections for you. We welcome enquiries about NZIRDR and how you may become involved to promote research on your rare disease.

5 – Important decision on carer payments expected in February.
It has been a very long time working its way through negotiation, Human Rights review, and through the Courts, and now the Cabinet is considering the detail of policy on payments in family care situations. Decisions should be announced in February to meet the intention that new policy implementation will be in place in May this year.

Of great interest to carers will be whether the announcements include any details about how the government intends to respond to the wider implications of the Tribunal and Court rulings, beyond those “disabled adult children” specifically dealt with in the legal arguments. Read more about the issue in NZORD’s submission made late last year.

ENDS

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

Cap Bocage: Anti-Mining Campaign Doco Debuts At NZ Film Festival

Playing at this year’s New Zealand International Film Festival, Cap Bocage is a close-up exploration of the forces that came into play when environmental issues and indigenous rights became intertwined in New Caledonia ... More>>

Film Fest:

More Film:

Sharon Ellis Review: A View From The Bridge

Arthur Miller’s A View From the Bridge is Circa’s latest big production, it opened on Saturday 19 July and it is a stunning triumph. More>>

Māori Language Week: He Karanga Kia Kaha Ake Te Tīhau Ki Te Reo Māori

The Māori Language Commission wishes to see social media swamped with Māori language tweets and messages for Te Wiki o te Reo Māori using the hashtag #tekupu. More>>

ALSO:

Book Vote: Kiwis Prefer Young Adult & Classics

To compile their Top 100 List for 2014, Whitcoulls again asked New Zealanders to vote for their favourite books and authors. And while classic novels continue to appeal to Kiwi readers, 2014 marks a significant new trend – the increasing popularity of novels for young adults. More>>

ALSO:

Five NZ Cities: Bill Bailey Back To The Southern Hemisphere

The gap between how we imagine our lives to be and how they really are is the subject of Bill’s new show Limboland. With his trademark intelligence and sharp wit, he tells tales of finding himself in this halfway place. More>>

Scoop Review Of Books: Book Television Is Coming

Carole Beu of The Women’s Bookshop in Auckland, Graham Beattie of The Book Blog and producer Deb Faith of FaceTV have raised enough money via crowd funding at Boosted – just under $7,000 so far – for 12 episodes, which begin production in September, and will be on screen later that month. More>>

Electric Sheep: Light Nelson Exceeds All Expectations

Light Nelson exceeded all expectations drawing over 40,000 people over two nights to the Queens Gardens and surrounds. The event, with over 40 installations from local and national artists, is in its second year, and organisers were hoping they’d top last year’s crowd of 16,000. More>>

MacGyver: Richard Dean Anderson To Attend Armageddon This October

New Zealand’s biggest pulp-culture event, the Armageddon Expo is proud to announce the world’s most recognised DIY action hero will be attending the Auckland event at the ASB Showgrounds from October 24th to 27th. More>>

ALSO:

Barbershop Gold: Māori Party Singing Praises Of The Musical Island Boys

The Maori Party has congratulated four young men on a mission, who in 2002 took up barbershop singing at Tawa College, and tonight took out the Gold Medal in the 2014 International Barbershop Harmony Society competitions in Las Vegas. More>>

ALSO:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news