CJD Awareness

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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CJD Support Group Network

3 months ago

Research studies for the treatment or cure of prion disease have began and there is hope for the futureIn preparation for when a successful treatment becomes available it is vital to be able to identify changes and markers at a very early stage of conversion to disease before irreversible damage is done.For genetic family members in Australia this is a chance to contribute and participate in studies to identify at the very earliest point of active disease changes occurring even before the onset of symptoms. This could mean that you may qualify for future clinical trials for symptomatic patients at a very early stage and/or be invited to join clinical trials for asymptomatic patients in the future.A database will be set up by The Florey Institute of Neuroscience and Mental Health in Melbourne Victoria and all aspects of any studies will have ethics approval and data protection. We welcome all genetic family members in Australia to register their interest to be included in the genetic data base regardless of whether genetic status is known or unknown. By registering you will be kept updated with information on any future studies or opportunities. We are currently recruiting for a longitudinal study with details outlined here: Longitudinal Study information. Numbers of participants will be limited initially and for this study only individuals who carry a mutation for prion disease will be considered but there will be further opportunities and genetic family members, who have tested negative to carrying a mutation, may be called upon in the future as controls in other studies.To register to be considered for the Longitudinal Study or to register your interest in future studies and information, click here: Expression of Interest for participating in research studies www.cjdsupport.org.au/form-eoi-participating-in-research-studies/To find out more about recruitment for the Longitudinal Study, click here:Longitudinal Study Informationwww.cjdsupport.org.au/resources/research/longitudinal-study/Please share this email with any other family members who may be interested in updates or participating in the current or future studies.Best wishes, Suzanne Suzanne SolvynsDirector/National CoordinatorCJD Support Group Network, Australia ... See MoreSee Less

Longitudinal Study – CJD Support Group Network Australia

www.cjdsupport.org.au

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CJD Support Group Network

3 months ago

Saturday 17th August, 20241pm – 5pmMecure Perth on Hay, 417 Hay Street, Perth WAAfternoon tea will be providedThis meeting will be both structured and informal giving you all time to meet and share your stories.We also have some very interesting presentations and updates on drug development for prion disease and further details on a longitudinal study which is aiming to help to identify bio markers and early onset of active disease .The meeting is free of charge, and you are welcome to bring along other family members or friends who may be interested in updates.RSVP by Monday 12th August 2024www.cjdsupport.org.au/product/cjdsgn-perth-meeting-registration/ ... See MoreSee Less

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CJD Support Group Network

3 months ago

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