Coping with myelofibrosis

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 can look at Cancer Research UK’s discussion forum - Cancer Chat. It is a place to share experiences, stories and information with other people who know what you are going through.

Cancer Research UK nurses

For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They can give advice about who can help you and what kind of support is available.

Organisations

There are organisations that can help you cope with a diagnosis of myelofibrosis.

MPN Voice

MPN Voice provides information, community and advocacy for people with myeloproliferative neoplasms and their families or carers. They also have information for healthcare professionals.

Email: info@mpnvoice.org.uk 

Telephone: 07934 689 354 (Monday to Friday between 8am and 5pm)

Leukaemia Care

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 opening times are:

  • Monday 9am to 5pm
  • Tuesday and Wednesday 9:15am to 2:15pm
  • Thursday 9:15am to 2:15pm and 7pm to 10pm
  • Friday 7pm to 10pm

Email: support@leukaemiacare.org.uk

Blood Cancer UK

Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Support line: 0808 2080 888 

Email address: support@bloodcancer.org.uk

Last reviewed: 
29 Jul 2020
Next review due: 
29 Jul 2023
  • Improving supportive and palliative care for adults with cancer
    National Institute for Health and Care Excellence, 2004

  • Cancer and its management (7th edition)
    Tobias J and Hochhauser D
    Wiley-Blackwell, 2015

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