This campaign has now closed
The CJD Support Network provides emotional and practical support to families and professionals affected by CJD and for those people who are told that they are at heightened risk through blood and surgical instruments. To receive a diagnosis of this very rare terminal illness is isolating and devastating for patients, families and professionals who may never have seen a case of CJD before. We provide a dedicated 24 hour helpline to offer support and advice.
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We were formed in 1995 by families who have lost family members to this devastating disease. We have now become the lead charity for CJD. Since formation we have received help with funding from the Department of Health. Due to new funding criteria 2009 will herald the challenge for the network to secure alternative forms of funding for their work. Our helpline receives up to 1000 calls per year, we provide emotional support and provide accurate and up to-date advice and information on this very rare disease. We ensure that patients' needs and wants are at the centre of policy making by lobbying and sitting on specialist Government committees for CJD. Without future funding the helpline will have to close.