When you were first diagnosed your haematologist may have told you the disheartening news that “there is no cure.”
It’s true that none of the current medications available can eradicate your myeloproliferative neoplasm (MPN) but new research is pointing the way toward better treatments and we hope one day a real cure for patients with MPNs.
Want a cure? Ideas to explore
Learn what’s happening
The discovery of the JAK2 mutation was a major step in improving our understanding of MPNs. New drugs -JAK2 inhibitors – and others, are now in many clinical trials throughout the world. These drugs are showing promise in treating myelofibrosis (MF) and have started trials in other MPNs. Read more about the latest research by visiting our trials and research pages for more information.
Consider a trial
You may be a candidate for a clinical trial if you have MF, or if you have essential thrombocythaemia (ET) or polycythaemia vera (PV) and have not been able to tolerate standard treatments, or if they have been ineffective for you. Learn more about clinical trials in the UK in our research section. Please contact us at info@mpnvoice.org.uk for information about trials in the UK. You can also find information about international trials on the National Institutes of Health website (US) and the UK Clinical Trials Gateway.
Watch a video
If you’d like to hear a first-hand account of participating in the JAK2 inhibitor trial, watch our video interview of Albert, a man with MF who enrolled on one of the first inhibitor trials.
Talk to someone
It can be stressful to live from day-to-day with an illness, knowing that there is currently no cure, you may want to talk with someone in a similar situation – someone who understands what you are going through. MPN Voice offers a peer support programme that can match you with an MPN buddy. You may also wish to attend one of our MPN patient forums.
Help us fund research
MPN Voice is always raising funds to support selected research and clinical trials. You can be part of the team by raising funds on your own or participate in an MPN Voice fundraising event.
Make a donation or leave a legacy
Would you like to underwrite the costs of a nurse or junior researcher in a drug trial for MPNs? Please contact us at fundraising@mpnvoice.org.uk to learn about the many ways in which you can help.
