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Project information

CJD Support Network helpline

since the discovery of vCJD and the knowledge that it can be transmitted through blood and surgical instruments thousands of people are being told that they are at heightened risk. Our 24 hour helpline providing practical and emotional support for people affected and for those at risk.

This is a continuous project

Charity information: CjD Support Network

CjD Support Network logo
  • Need


    CJD is a devastating disease, always terminal, with no diagnostic test or treatment and death from onset of symptoms as little as 12 weeks to a few years. As it is so rare, often professionals have not seen a case previously. When a patient and their family are told that they have or are at heightened risk of CJD they are frightened and feel isolated.
    The CJD Support Network 24 hour helpline is a lifeline for families where they can obtain information about the disease and emotional support


    It will provide much needed support to patients, families and professionals

  • Aims

    Aim 1

    • To offer support to individuals and families concerned with all forms of CJD.


    » 24 hour helpline information sheets and booklets, written in lay terms Ability to link other families who have had a similar experience

    What success will look like

    Success will be... demonstrated by better informed families who will feel that they are not alone and have someone to speak to day or night

    Aim 2

    • To offer support to people who have been told they are at a heightened risk of CJD


    » 24 hour helpline information sheets and booklets, written in lay terms Ability to link other families who have had a similar experience

    What success will look like

    Success will be... , keeping people up to-date with new knowledge and supporting them when difficulties in discrimination of health care occurs and acting as a listening ear.

    Aim 3

    • emotional support for carers and to link families with similar experiences of all forms


    » family support meetings Linking families by telephone

    What success will look like

    Success will be...families attending our family support meetings and positive outcomes when two families are linked.

    Aim 4

    • To provide accurate, unbiased and up to-date information and advice about all forms of CJD.


    » Constantly reviewing the changing knowledge about CJD. Keeping abreast of new research. Commissioning CJD experts and regularly reviewing our info

    What success will look like

    Success will be... our information books and leaflets used by professionals to educate patients and families and families being better informed

    Aim 5

    • To promote good quality care for people with all forms of CJD


    » Working with and taking part in high level committees to ensure that patients are at the center of all policy making.

    What success will look like

    working with DH and Social Services to ensure guidelines are followed for CJD

  • Impact


    numbers of calls to our helpline. Better informed professionals. Care guidelines being adopted. Ensuring that policy makers understand the needs and wants of patients facing this devastating disease


    Lack of funding due to the economical climate


    annual report

  • Budget

    Budget - Project Cost: £50,000

    Loading graph....
      Amount Heading Description
      £30,000 worker;s salary one paid worker and volunteers
      £10,000 publication costs developing, printing and distribution
      £10,000 running costs office equipment, travel expenses, day to day running expenses
  • Background


    It is a national project run from our paid co-coordinator's home


    Over 700 telephone helpline calls per year
    approx. 60 new families affected each year
    Over 400 on our database who have all been affected by CJD

  • Why Us?

    Why Us?

    We are the leading charity for CJD

    Read more about the Charity running this project.


    Gillian Turner

    Paid National CJD Co-ordinator