Other MPN Support Groups and related Organizations
MPN Quality of Life Study Group Website
The Myeloproliferative Neoplasm Quality of Life Study Group, headed by Dr. Ruben Mesa of the Mays Cancer Center, is a collaboration amongst leading MPN physicians and researchers from some of the most prestigious institutions in the world, including the Mays Cancer Center at UT Health San Antonio MD Anderson, Arizona State University, University of Arizona, University of California Irvine, and the Mayo Clinic.
A MPN support network in England managed by Dr. Claire Harrison of Guy’s and St.Thomas and a team of patient volunteers. Their mission is to provide health information, emotional and social support to all MPN patients. For further information go to www.mpdvoice.org.uk/
The MPD Research Consortium is a National Cancer Institute supported project involving 50 International MPN Centers in the United States, Canada, Europe and Israel. It is a resource for both patients and physicians focusing on advancing the science and therapy of myeloproliferative neoplasms. http://mpdrc.org
Canadian Patient Advocacy Group-Canadian MPN Network
Genny’s Hope Foundation
The MPN Coalition
|Leukemia & Lymphoma Society
www.lls.org L&L S is the largest voluntary health agency dedicated to blood cancer and funds lifesaving blood cancer research around the world.
|MPN Education Foundation
www.mpninfo.orgThe Foundation promotes collaboration in the scientific community to accelerate research, and serves as a powerful advocacy group for patients and families. MPN-NET is the global online support and education list for patients, families, researchers and physicians.
|MPN Research Foundation
www.mpnresearchfoundation.org/ The MPN Research Foundation was founded by patients, for patients with a single goal: to stimulate original research in pursuit of new treatments — and eventually a cure — for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).
|NORD – National Organization for Rare Disorders
www.rarediseases.org The National Organization for Rare Disorders is committed to the identification, treatment and cure of rare disorders through education, advocacy, research and patient services.
www.cancercare.org Cancer Care provides free professional support services for coping and managing the emotional and practical challenges arising from cancer.
|MPN Alliance Australia (MPNAA)
www.mpnallianceaustralia.org.au TThe Myeloproliferative Neoplasms Alliance Australia (MPN AA) was formed in 2015 by a small group of motivated patients who themselves had a diagnosis of MPN. The patient-led advocacy group collaborates with the Leukaemia Foundation of Australia with the common goal of achieving better outcomes for Australian MPN patients.
Ken Young’s Email support list: firstname.lastname@example.org
|Cancer Support Community
www.cancersupportcommunity.org CSC is a international non-profit organization dedicated to providing support, education and hope to people affected by cancer.
|MPN Advocacy and Education International
www.mpnadvocacy.com The organization focuses on providing educational programs for patients and physicians to improve the lives of those affected by MPNs.
In 2012 these individual groups with the common interest in helping patients and caregivers with Myeloproliferative neoplasms joined together. Their primary goal is to discuss and act on needs and challenges faced by those living with MPNs and to create greater awareness of these rare diseases.