A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them

By CJDSGN20/06/2017News

From npr.org's Health News, Sonia Vallabh shares her story.

http://www.npr.org/sections/health-shots/2017/06/19/527795512/a-couples-quest-to-stop-a-rare-disease-before-it-takes-one-of-them

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CJD Support Group Network

6 days ago

Thank you Dr Debra Scott for making this happen. Promoting awareness of CJD (prion disease) amongst GP's through the Australian Journal of General Practice ... See MoreSee Less

Creutzfeldt Jakob disease

www1.racgp.org.au

Although rare, Creutzfeldt–Jakob disease is always fatal. General practitioners are often the first to see the patient, so ongoing awareness of the disease is essential.

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CJD Support Group Network

7 days ago

International CJD Awareness Day is 12th November. This year we are using the theme of 'united for prion disease awareness' to ensure that we are inclusive of patients and families affected by FFI and GSS, which are genetic forms of prion disease that come under the umbrella of 'CJD' as well as atypical forms of sporadic CJD such as VPSPr. Our brand new awareness Tee shirts are now available for ordering online and will also be available for purchase at the family conference 5th October in Melbourne. Tees are available in our colours of orange and blue on our website ... See MoreSee Less

CJD Awareness T-Shirt – CJD Support Group Network Australia

www.cjdsupport.org.au

With a front print designed to raise awareness for CJD and the back reads ‘Support for all Australians affected by prion disease, CJD FFI GSS’ plus contact information for the CJDSGN. The left sle...

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CJD Support Group Network

7 days ago

The Run4CJD for 2024 is now getting very close with the team of runners heading from Adelaide on 12th October due to arrive Terang in Victoria on 19th October. Last year this team raised $100,000 that has helped fund a longitudinal study that is being set up at the Florey institute in Melbourne. The longitudinal study is currently recruiting interest from genetic family members to participate in studies that will help identify early markers of conversion to disease so that once we have an effective cure, treatment can commence before damage is done to the brain. This is an exciting but also vital study so please if you can help your donation will be very much appreciated to support funding for this 5 year project. www.cjdsupport.org.au/run-4-cjd-2024/ Every cent donated with go directly to support the longitudinal study. ... See MoreSee Less

Run 4 CJD 2024 – CJD Support Group Network Australia

www.cjdsupport.org.au

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CJD Support Group Network

2 months ago

Recruiting for the Ionis clinical trial has resumed and the community statement is now posted on our website. Our Australian site in Melbourne is now open so we will keep you posted with any further updates. www.cjdsupport.org.au/category/research/ionisppharmaceuticals/ ... See MoreSee Less

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CJD Support Group Network

2 months ago

Register now to attend our 15th Annual National CJD conference on 4th and 5th October at the Jasper hotel in Melbourne. This is free of charge for CJD family members and those at risk. Health care professionals are welcome to attend for a minimal fee. Please share the link with anyone who might be interested in the current updates on research, drug development and diagnostic tools. This is a great opportunity for CJD families to meet with others for mutual support and ask questions of the many experts attending. Keynote speakers include Professor Richard Knight from UK, Professor Brian Appleby from US and Professor Steven Collins for the Australian National CJD Registry in Melbourne. ... See MoreSee Less

15th Annual National CJD Conference – CJD Support Group Network Australia

www.cjdsupport.org.au

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A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them

From npr.org's Health News, Sonia Vallabh shares her story.

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