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CJD Support Group Network (CJDSGN)

The CJDSGN offers support, information and assistance for family members and friends of patients suffering with suspected CJD and other prion disease and for those at increased risk of developing CJD.

The primary goal of the CJDSGN is to be part of your support system and assist you in anyway that we can.

To receive an information package for families, ongoing support or assistance with an infection control issue:

Call our National Toll Free Helpline- 1800 052 466 or email: contactus@cjdsupport.org.au

If we are not available we will return your call or email on the same day so please leave us a message.


The CJDSGN is a leading source of information and guidance for Health Professionals working with Australians affected by CJD and other Prion diseases. Health Care Professionals are welcome to registry to join our 'Interested Party List' to receive ongoing information.

Information Packages and in-service presentations are available free of charge on request.


Welcome to the CJD Support Group Network website.

The CJD Support Group Network offers support to all Australians affected by Creutztfeldt-Jakob Disease (CJD) or other prion diseases.

The CJDSGN provides information and support to families who are caring for, or coming to terms with the loss of a loved one to CJD and assists people who are ‘at increased risk of CJD’ by promoting an environment in the health care setting where patients feel comfortable and confident of receiving equity of care when disclosing their ‘at risk of CJD’ status.

The CJDSGN is committed to an advococy role on behalf of individuals and families affected by CJD and other prion diseases ,an ongoing national educational and awareness program, networking with the health care professionals , linking family members together for mutual support and continued assistance tofamilies keen to raise much needed funds for research into CJD in Australia.

The CJDSGN is a founding member of the International CJD Support Alliance (CJDISA) Member organisations of the CJDISA work together as an international coalition on behalf of patients and families affected by prion disease the world over.

Disclaimer: The CJDSGN is an independant organisation and has no formal affiliations with the Australian National CJD Registry (ANCJDR).


7th National Annual Conference 2014 - Sunday 19th October 2014

Registration is now open - click here

Please note: Due to a Jehovah Witness conference in Melbourne on the same weekend there is limited and overpriced accommodation only. For this reason we have changed the venue to Chirnside Park just out of Melbourne - Venue: Yarra Park Lodge - Date Now Sunday 19th October.2014

Yarra Valley Lodge is booked out but Yarra Valley Motel is holding a block of room until 1st September 2014- twin or Queen $165 for Saturday night 18th October - mention CJD Support Group Network when booking.

Genetic family meeting Saturday 18th October 2014 - 2.30pm

Welcome reception and Conference dinner 6.30 Saturday 18th October.

A shuttle service will operate on Saturday at 11.30am from the airport to Yarra Valley Lodge with return shuttle leaving Yarra Valley Lodge at approximately 5.00pm on Sunday - it is approx a 45 min trip.


Congratulations Lisa and Pete for raising $1300 for CJD research in memory of Lisa's Dad Graham by running in the Balckmore Fun Run in September 2014!


spital on Friday, people

Joe Bendall accepted the challenge to do something outrageous to raise funds for the CJD Research. At Sydney/Sydney Eye Hospital on Friday 3rd October, hospital staff paid a gold coin for the opportunity to throw a cream pie at Joe.
Suzanne Solvyns assisted by Brandon and Tianna collected the money and got to throw the first and last cream pies!

Enjoy the videos by clicking on wording below to watch this outrageous challenge to raise money for CJD Research!

Joe Bendall's challenge to raise money for CJD Research

Joe's challenge to Uncle Ziggy Poppy's Crusade

Joe after many cream pie throws


Purchase an awareness ribbon $2.00 each

or make a donation to support our CJD Research Teams in Australia in memory of your loved one

call 1800 052466Awareness Ribbon$2.00 each purchase on line

Make a donation to CJD Research in Australia

To request personalised envelopes for donations in lieu of flowers at a funeral.

All donations will go directly to CJD research in memory of your loved one.

Contact 1800 052466

I would like to make a tax deductible donation to support the CJD Research Teams in Australia.


Support our fundraising for CJD Research in Australia by purchasing one of our ‘Love and Star Bracelets in loving memory of the special people lost to CJD. 

Money raised by the sale of our bracelets helps to maintain our fundraising account so that every cent donated by families and friends can go directly into CJD Research at the University of Melbourne or the University of Sydney.


CJDSGN acknowledges the funding provided by the Department of Health for the provision and maintenance of this website. The CJDSGN asserts that apart from providing the funding the DoHA is not involved in anyway in the compilation of this website and the views expressed herein.

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