There is help and support available to help you cope with a diagnosis of a rare condition.
Coping with a rare condition can be difficult both practically and emotionally. Being well informed about your condition and possible treatments can make it easier to make decisions and cope with what happens.
It can also help to talk to people with the same thing. But it can be hard to find someone with a rare condition.
You could visit Cancer Chat – Cancer Research UK’s discussion forum. It is a place to share experiences, stories and information with other people who know what you are going through.
MPN Voice offer information and support to people with myeloproliferative disorders, including thrombocythaemia.
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.
Nurse or support team number: Freephone 08088 010 444 (Monday to Friday 9am to 10pm, Saturdays 9am to 12:30pm).
They also offer support to people with blood conditions that are not cancer.