We're here for you if you want to talk

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[email protected]

Co-create our health information

We want to hear from you if you're interested in sharing your lived experience with blood cancer to help us create our print and digital health information.

Three health information booklets about blood cancer laid upright.

Recent publications and projects

Thanks to the support of our blood cancer community, we're creating new health information all the time. Our most recent projects include:

  • Publishing a series of webpages about side effects of blood cancer including hair loss, nerve damage, brain fog, sleep problems and fertility struggles. We worked with people from our community to hear their experiences, find out what helped them manage side effects and co-design this information.
  • In 2023, people affected by blood cancer also gave their insight to help us produce a new booklet and online information about eating well.
  • We have also worked with people affected by acute myeloid leukaemia (AML), myeloma, myelodysplastic syndromes (MDS), essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF) to update and improve our online and printed information on these conditions.

Current and upcoming projects

Currently, we're reviewing our health information about a number of different types of blood cancers including:

  • acute lymphoblastic leukaemia (ALL)
  • chronic myeloid leukaemia (CML)
  • diffuse large B-cell lymphoma (DLBCL)
  • follicular lymphoma
  • infections and sepsis (to make sure we reflect a diverse range of voices we are specifically looking to recruit people of Black, Asian or minority ethnic backgrounds for this project)
  • stem cell transplants.

Want to take part?

If you have a lived experience of any of the above blood cancers and want to share your insight to co-create our health information, we'd love to hear from you. Get in touch with our health information team at [email protected].

It's important to us that we hear from people from a range of cultural backgrounds and ethnicities to make sure that we're producing the most accurate and relevant information we can for anyone affected by blood cancer.

Website development

Over the past few years, we have been doing some important work to improve the user experience across our website which hosts all of our vital health information. We have begun to explore how people affected by blood cancer use our website, to allow us to make our information as easy to access and user friendly as possible. To do so, we have been asking people to undertake a series of tasks and feedback their thoughts.

If you are interested in shaping the future of our website, please contact Ben Sykes at [email protected]