NZORD Newsletter 2013 #6 - 24 October 2013

Hello everyone,

In this issue:

1 - Announcing the NZ Rare Disease Biobank is open for business.
2 - NZORD has a meeting room available on the fringe of Wellington’s CBD.
3 - Diagnosing Credible Science Online: A Survey for parents from a NZ researcher.

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1 – Announcing the NZ Rare Disease Biobank is open for business.

Several years ago NZORD began the process of seeking ethics approval to collect samples from patients and families for research on rare diseases. We have completed the development phase of the biobank, in partnership with the Pathology Department at the University of Otago, through our charitable company NZIRDR Ltd, the NZ Institute for Rare Disease Research Ltd. 

We now have our first few samples collected and stored. Read more about the biobank, including the summary Q&A on donating, and in particular the detailed information sheet about collection, storage and use.

We invite rare disease support groups to consider promoting the collection of samples for research on the rare diseases you support. If you’d like to explore this, please contact us to discuss it. Logistics will be an important consideration that may require different approaches for different groups, and in each case there will be a need to gather disease-specific information relevant to the sample and the disease. It will be helpful if your group has a close relationship with a clinician or researcher who could assist with decisions about the best sample type and the best accompanying information for your particular disease.

To discuss the biobank further with us, contact Olivia Baddeley, Project Manager - Research, on 04 471 2225 or email to enquiries@nzirdr.org.nz

2 – NZORD has a meeting room available on the fringe of Wellington’s CBD.

We have taken over the office next to ours and we now have a separate meeting room that is available at very reasonable rates for rare disease groups wanting a meeting place in Wellington city. The room has a meeting table that can seat up to 10 people comfortably (12 at a squeeze), a small kitchen to prepare hot drinks and snacks, and enough space in the room (8m x 6m) to spread out for working sessions and small groups. Bookings can be made for weekday, evening or weekend use. A modest fee will be negotiated to cover costs. Initially we intend to charge just $50 for a full day. There is plenty of nearby parking for evenings and weekends, but parking is tight during normal office hours. Enquiries are welcome. 

3 – Diagnosing Credible Science Online: A Survey for parents from a NZ researcher.

Hayley Cross, a Masters student at the Centre for Science Communication, University of Otago, is working to gain an understanding of how New Zealand parents and guardians find and use online health information. She is looking for New Zealand-based parents or guardians who have previously used the Internet to look for health related information, such as information about diets, symptoms or illnesses, to take part in a survey to help her research. We encourage you to seek participation in this research across your networks.

The survey can be found here. 

Regards, john

John Forman
Executive Director