Rare Disease Day cocktail evening

Cocktail evening invitation
View invitation

NZORD invites you to a cocktail evening on Monday 29th February to celebrate Rare Disease Day, to be held in Wellington at the Wellington Club. Rachel Callander from the Super Power Baby Project will be our special guest speaker.

Tickets are on sale now for $75. Order yours from comms@nzord.org.nz.

Meeting the community

On March 1–3, NZORD’s chief executive Letitia O'Dwyer will be travelling to Auckland, Christchurch and Dunedin to meet members of the rare disease community. Please pop in to say hello and catch up over refreshments. View the graphic showing the dates and venues.

NZORD Newsletter 2004 #3 - 30 March 2004

Hello everyone,

In this issue:
1 - Review of Health & Disability Commissioner's Act and Code of Rights.
2 - Free Influenza Vaccination Campaign.
3 - Ministry of Health notices on disease risks and prevention.
4 - Reminders: Ethics, Transgenics and Conference.

1 - Review of Health & Disability Commissioner's Act and Code of Rights.
The Health and Disability Commissioner, Ron Paterson, is currently reviewing the Health and Disability Commissioner Act and the Code of Health and Disability Services Consumers' Rights. These provisions are important protections available in our health system. Is your group satisfied with what they say and how they are implemented? You can make a submission on this review. A discussion document and questions are available on the H&D commissioner's website. Submissions close 30 April 2004.

NZORD is considering a submission on the adequacy of the Commissioner's complaints-based advocacy service, for those with intellectual disability and other mental impairments. An ongoing advocacy system would seem very desirable for those lacking capacity and who have no immediate family or friends to oversee their welfare when in health or disability services long-term. Let us know of any comments you have on this, or additional points you'd like us to submit on, prior to 30 April.

2 - Free Influenza Vaccination Campaign.
The Ministry of Health funds free influenza vaccinations each year for those at greatest risk of complications from the disease – those aged 65 and over and those adults and children with certain chronic medical conditions. The vaccination is now available from most General Practices. NZORD encourages support groups with at-risk membership, to promote the uptake of this free service, and prevent avoidable deaths. Click here to read more on the Ministry of Health website......... 

3 - Ministry of Health notices on disease risks and prevention.
The Ministry of Health has recently published statements on a number of serious diseases, and prevention and control strategies for them. These include HIV, Hepatitis B, Meningoccocal B disease, Measles and Tuberculosis. Are any of these of particular relevance to your support group? Click here to read more on the Ministry's media release page, for guidance on what you might pass on to your own mailing lists.

4 - Reminders.
The genETHICS competition is open to secondary school students, examining the ethics of wider genetic testing. Read more....

The Bioethics Council's public consultation on transgenics (the insertion of human genes into other organisms) continues through till 3 May 2004. Read more about how to participate in the public discussion, or read NZORD's articles on transgenics in our website's News and Issues pages.

NZORD Conference 29-29 May 2004. Take advantage of the extended early-bird registration fee. Click here for details.

Regards, John

John Forman
Executive Director