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: firstname.lastname@example.org
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 and 7.45am Sunday from the airport to Yarra Valley Lodge with return shuttle leaving Yarra Valley Lodge at approximately 5.15pm on Sunday - it is approx a 45 min trip.
'Danielle Runs 10km for CJD'
Pushing my limits and running 10Km as part of the Adelaide Running Festival
When - 24th August 2014 - In memory of Nanna 'Sophie Desteno'
Every cent donated with go to purchase equipment for the Research Teams at the University of Melbourne to help find a treatment or cure!
Tax deductible receipts will be issued by the CJDSGN - click here to donate Please add Danielle's run to the message box
Tally as at 27th August 2014 - $ 1016.00 - Congratulations Danielle!
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 052466$2.00 each purchase on line
BUY A CJD BRACELET TO SUPPORT FUNDRAISING purchase on line
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.