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).
Announcing the 2015 CJD Support Group Network family conference!
Please save the date - Saturday 14th November 2015.
The 8th Annual National CJD conference will be held at the Jasper Hotel in Melbourne on Saturday 14th November 2015. This conference is free for CJD family members and all affected by prion disease in Australia. On Friday 13th November we will also host an afternoon meeting for genetic family members. We are in the process of confirming speakers but will again be privileged t...o welcome experts and researchers from Australia and overseas, who always generously share their knowledge and assist families by answering questions and explaining current research.
On Sunday 15th November you are all welcome to join with members of the CJDSGN committee, researchers, staff of the ANCJDR and other family members to participate in the City to Sea by either running and walking in the 14km or 5km events. We will again be wearing our orange Tee shirts with logo to promote awareness and also hope to raise money for prion research.
We hope that many of you will join us for the whole weekend!
Sunday, November 15, 2015 - Support Team Prion
Support Team Prion - https://city2sea2015.everydayhero.com/au/team-prion-1 - to raise money for CJD research in Australia.
Join the CJD Support Group Network - face book group
We have started a CJD Support Network Group in addition to our face book page, and you are all invited as family members and friends to join this group to share personal stories and offer mutual support. This is a closed group as our aim is to provide a safe environment for support and sharing. This is a group for those personally affected by CJD and other prion disease and those of you who are members of this site already I know you will support new families members who unfortunately will continue to join our 'family'. We look forward to welcoming you all to the CJDSGN group page!
Thank you to all of you who promoted awareness on International CJD Awareness Day - 12th November 2014 by wearing your orange bracelets and ribbons!!
Purchase an awareness ribbon or a bracelet - $2.00 each
or make a donation to support our CJD Research Teams in Australia in memory of your loved one
call 1800 052466 purchase on line
The CJDSGN is a registered charity and all donations over $2 are tax deductible
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.
CJDSGN also acknowledges donations from CJD families received to support the cost of resources for CJD family members. A special thank you to Mr Graham Murray and his company the Australian Animal Care Systems Pty Ltd who support the CJDSGN as well as prion research in Australia.