Information, community and advocacy for MPN patients, their families and carers, and health care professionals.
The volunteers who founded MPN Voice* (previously known as MPD Support Charity and MPD Voice), wanted to provide a source of professionally backed information, build and facilitate an MPN community and advocate for patients affected by this rare group of blood cancers*. MPN Voice is still run by volunteers comprising MPN patients and healthcare professionals who continue to share this vision. Myeloproliferative neoplasms (MPNs) were formally known as myeloproliferative disorders (MPDs).
Over the years MPN Voice has developed to provide a wide range of unbiased and medically backed information including leaflets and newsletters, and runs regional forums where MPN patients can meet and hear about the latest MPN research. It has also invested in research and supporting clinical trials and recently has become proactive in developing links with other European MPN groups to become more visible in advocating on behalf of MPN patients.
MPN Voice offers a unique buddy system, supported by healthcare professionals, putting MPN patients in contact with other patients who can provide a sympathetic and supportive ear for when things are new, tough or confusing.
*Myeloproliferative neoplasms (MPNs)and blood cancers. The World Health Organization have classified MPNs as blood cancers due to the fact that in these diseases the blood cells are behaving in an abnormal/uncontrolled manner. In reality, the diseases are much less life threatening/changing for patients than other blood cancers. When diagnosed and managed well, most MPN patients can continue with near to fully normal lives.
*MPN Voice is registered under the auspices of Guy’s and St Thomas’ Foundation. Charity number 1160316-15