Monthly Archives

April 2017

New guidelines for genetic testing for CJD and other prion diseases

By News

We are very pleased to announce that the guidelines for PRNP genetic testing, produced in 2016 by a working group chaired by Professor Martin Delatycki,  are now completed and have been submitted to the Human Genetics Society of Australasia (HGSA) for ratification.

The following guidelines are recommended procedures, not regulations. They are recommendations concerning the use of genetic testing for the detection of mutations in the prion protein gene (PRNP) and were developed by a committee consisting of representatives of genetic counselling services, genetic testing laboratories, the CJD Support Group Network (CJDSGN) and the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR).

These recommendations are to be used to protect and assist at-risk individuals and should be therefore freely available to patient families to ensure that they are able to make independent informed decisions. These guidelines are also intended to assist clinicians, clinical geneticists, genetic counsellors, testing laboratories, health departments, ethics committees and lay organisations in caring for patients and their families.

PRNP Guidelines April 2017

Fundraising Raffle

By Fundraising

The Papalia family in WA has organised a raffle to raise funds for CJD research in Australia.

This family lost a husband, father and grandfather to this devastating disease in late 2015 and have been raising funds and promoting awareness since that time.

Tickets are now on sale and $5.00 could win you one of three fantastic prizes.

Please call Maria on 0412905588 if you would like to purchase some tickets, or even better sell a book, to assist this fantastic cause.

All proceeds raised will go to the CJD Support Group Network and every cent will be directed to support research of CJD and other prion diseases in Australia.

Thank you to Poppy’s Crusade for assisting the family with this fundraiser.