Who we are
MPN Voice, registered under the auspices of Guy’s and St Thomas’ charity is run by people with MPNs and medical professionals working together to serve the needs of everyone with myeloproliferative neoplasms (MPNs). Haematologists and MPN specialist nurses of the NHS in the United Kingdom provided the medical expertise to develop this website, with additional support from haematologists and other physicians of the Mayo Clinic in the United States.
In 2009 MPN Voice won a national award for innovative service to patients.
Our aims
Our aim is to foster community, provide support and improve awareness and knowledge of MPNs. Starting in 2009 we also began funding research into drug trials in the United Kingdom.
Our approach
We take a fact-based approach grounded in science. Our goal is not to replace or contradict advice from healthcare professionals but instead to supplement and complement the information that patients receive from professionals. We explain complex terms in easily understood language; we offer guidance on lifestyle improvements; and we provide emotional support.
Research information for patients
We provide a means for patients to keep abreast of the latest appropriate clinical research via a research blog, and research information published on our website and in our newsletters. Additionally we offer a bibliography on our website, pointing patients in the direction of interesting papers.
Support for you
We hope that our website will be a valuable resource to you as healthcare professionals, you are welcome to:
- Download and print our leaflets [treatment leaflets] . MPN Voice publishes a series of leaflets on a number of different MPN treatments as well on questions about travelling when you have an MPN.
- Print and share pages. Every page in this website is printable. We think you’ll like this new feature! Choose the print option in your browser (File>Print) to convert any page to printable format.
- Distribute our leaflets. If you need a number of copies in booklet form please email info@mpnvoice.org.uk for an order form.
Grants and Funding
MPN Voice offers financial support to the medical community for initiatives and projects that make a positive impact on MPN patients and healthcare professionals, we are committed to focus our support in areas that can have the greatest impact on improving the lives of MPN patients.
MPN Voice can provide reasonable financial support for initiatives and projects like:
• Surveys and audits to facilitate department initiatives to improve patient support
• Provision of patient information packs
• Setting-up/running a patient forum in partnership
Submit requests for funding to: info@mpnvoice.org.uk
Research Funding
MPN Voice has a mission to encourage research for the benefit of MPN patients, for example, support for MOSAICC and the Mithridate study.
Funding from MPN Voice is now available to support either the entirety or part of a specific research project that will benefit MPN patients. A maximum funding of £50,000 is available, subject to review following formal application.
Closing date for the current round of applications – 30th September 2024. To request an application form please email info@mpnvoice.org.uk
Fiona’s Fund
Supported by a legacy from a grateful patient who had a long relationship with MPN Voice, to be used to support educational needs of clinical staff, prioritising nurses, pharmacists, psychologists and allied health professionals. Specifically, funding will prioritise projects which can be shown to benefit MPN patient care, examples might include, but not limited to, undertaking a prescribing or examination course, support for an improvement course. A maximum funding of £1,500 is available, subject to review following a formal application.
Applications for Fiona’s Fund can be made at any time. To request an application form please email info@mpnvoice.org.uk
We invite your participation
We are developing more tools for professionals to use. We welcome any suggestions and feedback from the medical community. Please email us at info@mpnvoice.org.uk.