Ehlers-Danlos Foundation of New Zealand

 

 

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The Ehlers Danlos Foundation of New Zealand began as a support group in May 1995 when it was believed there were only twelve families in the country with the condition. Of course this proved a remarkable underestimation of the number of people within New Zealand who actually have EDS. Also catering for people with Hypermobility Syndrome the group achieved charitable status in early 2000. 

The aim of the organization is to provide emotional support for sufferers of the Ehlers-Danlos Syndrome and HMS, their spouses and family members. Also to create awareness of these conditions by the distribution of information amongst the medical profession and general public. Therefore a newsletter "Loosely Speaking" is published three times a year. It contains both medical information on EDS and personal stories written by the members of the EDFNZ.

 

Individuals with Ehlers-Danlos Syndrome can be affected differently with a variation in the severity and range of symptoms. Because they so often look "normal" it is often difficult to have the condition taken seriously by the medical profession and even within their circle of family and friends. Therefore it can also be an isolating condition and the general lack of awareness and understanding can lead to feelings of frustration, stress and depression.

 

If you're interested in either making a donation or in joining the EDFNZ as a member or Friend of the Foundation please feel free to print out the subscription form and mail to the address below. For $10.00 NZ you will receive a copy of Loosely Speaking, the Foundation's newsletter, three times a year. Also check our news page for latest information. Also donations are gratefully received 

Telephone
+64-06-856 5577     
           0274-95-7799
Postal address
Jen Longshaw,
368 Butler Road
RD 3
Waipawa 4273
      Hawkes Bay,
New Zealand
Electronic mail
Jen Longshaw at flopsy@ihug.co.nz

Medical Advisory Panel:

Ingrid Winship, Geneticist, Susan Stott, PhD FRACS, Lidija Erdelez, MD, FICA, General Surgeon

 

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Copyright 2000-2008 Ehlers-Danlos Foundation of New Zealand 
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