If you are a carer we can:

  • Offer you advice on care and support.
  • Link you with other carers with experience of the same strain of CJD.
  • Offer a care grant to families who are in financial hardship due to caring for a loved one with CJD.

If you are a professional, we can:

  • Advise on the CJD care package and cost effective care.
  • Link you with other professionals with experience of providing CJD care.
  • Enable you to meet the needs of carers.
  • Provide you with information and training on CJD.
  • Advise on good practice and policy for CJD.
  • Provide nursing and social work guidelines for CJD.

Counselling and Support

If you telephone our helpline on 0800 774 7317 there is someone to speak to between 8am and 6pm on Tuesdays and Fridays for emotional support and practical information, messages left outside this time will be responded to as soon as possible. 

If you wish to access formal counselling you can speak to your GP who will be able to provide you with information on local counselling services. Information regarding genetic counselling can also be found at https://www.ucl.ac.uk/national-prion-clinic/counselling-and-support