If you have been told that you are at a higher risk of CJD through a blood transfusion, we would like to hear from you.
As a patient support group we want to ensure that patients, like you, are given this news in the best possible way through clear information and advice. This should be backed up by on going emotional support for you and your family.
Through our 24 hour helpline we have received calls from patients that have been given this information which, in some cases, have been left devastated through insufficient and inappropriate information with no offer of emotional support.
We are working very closely with statutory agencies to ensure that the information process is timely, informative and supporting.
Your experience when you were told of your higher risk, whether good or bad, will help us to help other patients and families.