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Organisation For Rare Disorders Newsletter


NZORD - the New Zealand Organisation for Rare Disorders Hello everyone, In this issue: 1 - Pre-implantation Genetic Diagnosis. 2 - Pharmac consultations. 3 - Events calendar for 2004.

1 - Pre-implantation Genetic Diagnosis. With the Human Assisted Reproductive Technology Bill due to be passed soon, and with the National Ethics Committee soon beginning public consultation on this procedure, public comment is increasing about the ethics and impact of this dramatic new technology. We have prepared a commentary on the topic from a family and support group perspective. http://www.nzord.org.nz/internal.asp?CategoryID=100009&SubCatID=100066&ArticleI D=100129 Read more....

&SubCatID=100066&ArticleID=100129> http://www.nzord.org.nz/internal.asp?CategoryID=100009&SubCatID=100066&Ar ticleI=100129> &SubCatID=100066&ArticleID=100129

2 - Pharmac consultations.

You can keep up to date with changes that Pharmac proposes to make to the availability or subsidy of your medicine, by registering to receive their email alerts of consultations. This is an easy way to be well informed about proposed changes that may affect medicines of interest to your group, and improves your chances of influencing the final decision. Go to http://www.pharmac.govt.nz/mailing_list.asp and add your name and email address, then check 'consultations', plus any other information you'd like to receive. NZORD is happy to discuss the implications of any proposed changes for your group, and advise on how you might respond.

3 - Events calendar for 2004.

Over the past year we listed more than 50 support group events. Our list for 2004 will be posted during December. To be included, send details of your event to exec.director@nzord.org.nz

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