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Contact Us
Secretary:
Jenny Noble
16 Woodleigh Place
Ohauiti
Tauranga
New Zealand
Ph 07 544-8868
Email jenny.noble@xtra.co.nz
Newsletters and Conference Reports
Our Newsletters
- April 2008 (pdf format)
- December 2007 (pdf format)
- April 2007 (pdf format)
- December 2006 (pdf format)
- April 2006 (pdf format)
Conference Reports
- Joanne Labedzki – National Tay Sachs and Allied Diseases, Boston, April 2009
- Kate Linterman – 12th International Congress on Neuronal Ceroid Lipofuscinosis (NCL), Hamburg June 3–6th 2009
- Ra Timms – 4th BDSRA Conference Kingscliff NSW, Friday 26th–Sunday 28th October 2007
- Lynda Dougan – 4th BDSRA Conference
- Lorraine McKinnon – NZORD Conference 2007 1st–2nd November 2007
- Marianne Hannagan – NZORD Conference 2007
- John Dernie – 2nd International Conference for IMSRD Ann Arbor, Michigan, 2007
- Various families – 11th National Australian MPS Meeting in Brisbane 28th September–1st October 2006
- Emma Graham – Cystinosis Conference, Mandurah City, Australia, September 9th and 10th 2006
- Sharon Noble – First International Education Conference for Batten Disease Sweden 3rd–6th May 2006
- Gina Murray – National Tay Sachs Conference April 2006 Alexandria, Virginia, United States
- Jenny Noble reports on her trip with her daughter Sarah to meetings of the ISMRD Board and a workshop on Glycoprotein storage diseases, in the USA, April 2005.
- John Forman - the MPS/Lysosomal Diseases conference in Mainz, Germany, June 2004
- Jenny Noble - the April 2004 Glycoprotein storage diseases conference, Washington
- Laurie Hill - the International Pompe Association conference, October 2003
- A brief report on the September 2003 1st National Conference of Lysosomal Diseases New Zealand, held in Auckland
- Freda Evans - the International Pompe Association conference October 2002
- Lynda Morrell - the Australian MPS conference April 2002
John's Journal
- Issue 1 - July 1997 - March 1999
- Issue 2 - April 1999 - July 1999
- Issue 3 - August 1999 - October 1999
- Issue 4 - November 1999 - February 2000
- Issue 5 - March 2000 - August 2000
- Issue 6 - September 2000 - March 2001
- Issue 7 - April 2001 - December 2001
- Issue 8 - January 2002 - April 2003
- Issue 9 - May 2003 - May 2004
This journal is a diary of John Forman's efforts to promote research and improvements to information and clinical care for Lysosomal Storage disorders, and to develop the support group, LDNZ. It is written as a record of events and contacts, and to assist those with an interest in rare disorders and support group development. After the first few years it expands into discussion of the development of NZORD, the New Zealand Organisation for Rare Disorders.
John Forman
Email john.forman@xtra.co.nz