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| REVIEW RESULTS |
It may be old news but still I love reading it… Hypohydrotic Ectodermal Dysplasia and Hays-Wells Syndrome were listed as Recognised Disabilities for the purpose of Carers' Allowance for Centrelink as from 01/07/2005. ozED’s campaign no doubt contributed to this fantastic result… Well done to all those who assisted.
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| Research Central… |
Research announcement from the United Stated of America (NFED) conference has shown that scientists have been able to reverse the effects of ED in mice and dogs. This is a very significant development with human trials set down for 2008 in the USA. (subject to FDA approval). Whilst this is not a cure it has the ability to significantly reduce the impact of the symptoms including absent sweat function.
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| Victorian Genetic Testing |
The Victorian Government has agreed to fund genetic testing for ED families. This brings Victoria in line with most other states. Victorian families that would like to consider have testing done should contact ozED for referral advice at info@ozed.org.au
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| Cleft Palate Review |
The ozED membership has moved a motion at the November 2006 meeting to lobby government for a review of the cleft palate scheme. ozED understands that families are being informed that dental implant treatment for ED affected people is going to cost tens of thousands of dollars. This is mainly because many of the procedures in the cleft palate program are determined as “cosmetic”. This is something that ozED hopes to have reviewed. This will be a National campaign and ozED hopes to gain the support of various organisations in both the private and public arena to support our campaign. Cleft Update There has been further progress on the Cleft Palate Review please use the following link and contact us with any issues. |