NZORD Newsletter 2012 #4 – 24 September 2012

Hello everyone,

In this issue:
1 – New Zealand Rare Disease Day – please take part in our quick online survey
2 – Share your story
3 – Join us on Facebook
4 – Recommended reading
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1 – New Zealand Rare Disease Day – please take part in our quick online survey
Rare Disease Day 2013 will take place on Thursday 28 February 2013. We’re getting ready to update the website (www.rarediseaseday.org.nz) and work on some new publicity materials for 2013, but we want to make sure we’re producing materials that are useful for the events you might already be thinking about for next year. Please take a couple of minutes to complete this online survey http://www.surveymonkey.com/s/Q899GBN so we can make sure we’re producing what you need to help you arrange a successful event for Rare Disease Day 2013. The survey will be live until Friday 5 October 2012.

Don’t forget, if you’re a support group that isn’t set up as an incorporated charity, NZORD can collect donations on your behalf and hold them in trust for your group’s activities. Contact enquiries@nzord.org.nz if you’d like to know more.

2 – Share your story
NZORD is on the hunt for new stories to share on our website to help other people with rare diseases and their families to learn from your experiences and help them realize they are not alone. If you would like to tell your story, please email us at enquiries@nzord.org.nz. We’ve put together some questions that might help you put your story together:

  • Who is affected by a rare disease in your family?
  • What is the name of the rare disease?
  • What are the clinical features / symptoms?
  • How was the disease diagnosed?
  • How does it affect your family and the family member with the disease?
  • What have you been able to find out about the disease in New Zealand? Internationally?
  • Were there any particular challenges regarding diagnosis and clinical management? How were these overcome?
  • Are you involved with a support group in New Zealand? Internationally? (We can link to the support group if they have a website)

If you’d like to include a photo of yourself, or your family, please do so. We’ll publish your story on our website as soon as we can.

3 – Join us on Facebook
We’ve set up a new Facebook page that we’re keen for all the support groups who use Facebook to ‘like’ to help us build up our network. We’re planning to add content as often as we can and we’re also happy for you to get in touch with us via Facebook if you’d like to. We’ll make sure we post links to interesting sites and topics as we discover them and we hope you’ll do the same.

Some of you may have come across our earlier Facebook page – please switch across to our new page with the full title NZ Organisation for Rare Disorders to make sure you’re keeping up with our thoughts and activity.

4 – Recommended reading
Ricki Lewis’ The Forever Fix: Gene Therapy and the Boy Who Saved It, is a superb interplay of a good story and good science. It outlines the peaks and troughs of the journey towards gene therapy, from the perspective of both the people involved and the science behind it. This very readable book is ideal for patients and professionals alike.

Regards, john

John Forman
Executive Director