Meeting the Needs of People Affected by Myeloproliferative Neoplasms (MPNs)
The Organizational Partners formed to provide a forum for discussion of and action on needs and challenges faced by those living with and affected by MPNs. The Coalition aims to create greater awareness of these rare diseases and to enhance education and access to care. We strongly believe that with these resources and support, people affected by polycythemia vera, myelofibrosis, and essential thrombocythemia can have the best possible quality of life.
The Organizational Partners share a vision of a world in which people with MPNs and their families have:
- Access to appropriate treatments
- A comprehensive program of education and support
- State-of-the art care
- Hope for better options in the future
The Organizational Partners consist of the following organizations:
MPN Advocacy and Education International – www.mpnadvocacy.com
MPN Advocacy and Education International is dedicated to providing the knowledge, support, and resources patients with myelofibrosis, polycythemia vera, and essential thrombocythemia will need as they adjust to living with a myeloproliferative neoplasm. This is done through educational symposia in several cities each year, website access, free webcasts of each program, collateral materials, and direction to people, resources, and other organizations that can help.
MPN Education Foundation – www.mpninfo.org
The MPN Education Foundation is a non-profit organization incorporated in 2004 and run by volunteer MPN patients. It hosts patient-doctor conferences to improve patient knowledge about their MPNs and to give patients the opportunity to meet with top MPN specialists. These events take place every two years.
MPN Research Foundation – www.mpnresearchfoundation.org
The MPN Research Foundation is a non-profit organization whose mission is to promote, fund and support the most innovative and effective research into the causes, treatments, and potentially the cure for polycythemia vera, essential thrombocythemia and myleofibrosis.
CancerCare – www.cancercare.org
CancerCare is a non-profit organization providing free, professional support services to individuals, families, caregivers, and the bereaved to help them better cope with and manage the emotional and practical challenges arising from cancer.
Cancer Support Community – www.cancersupportcommunity.org
Backed by evidence that the best cancer care includes social and emotional support, the Cancer Support Community offers services free of charge to men, women and children with any type or stage of cancer and to their loved ones. Services include support groups, educational programs, healthy lifestyle classes, opportunities for social networking and help locating resources.
Cancer Research & Treatment Fund, Inc. – www.crt.org For more than four decades, the Cancer Research and Treatment Fund (CR&T) has funded the world’s most promising physician-scientists, equipping them with resources to advance the treatment of various types of blood cancers including myeloproliferative neoplasms (MPNs), leukemia, non-Hodgkin’s lymphoma, Hodgkin’s disease and multiple myeloma as well as other common cancers such as breast and lung cancer.
The Leukemia & Lymphoma Society – www.lls.org
The Leukemia & Lymphoma Society (LLS) is the world’s largest non-profit health agency dedicated to helping patients with blood cancer and their families. LLS funds blood cancer research around the world and provides free information and support services to patients and their families.
National Organization for Rare Disorders (NORD) – www.rarediseases.org
NORD was established in 1983 as an umbrella organization providing advocacy, education, and awareness on behalf of all patients and families affected by rare diseases. Approximately 200 rare disease organizations are members of NORD.
Aplastic Anemia and MDS International Foundation-www.aamds.org
The Aplastic Anemia and MDS International Foundation (AAMDSIF) supports, connects and educates patients, caregivers and health professionals on bone marrow failure diseases, including aplastic anemia, MDS, PNH and related diseases. Its mission is to serve its community in every phase of these diseases worldwide. AAMDSIF also promotes and invests in collaborative clinical research to accelerate the discovery of better treatments and cures for bone marrow failure diseases.
Community Connection Support Groups
Patient and Family Conferences
Founded in 2011, MPNforum and its companion MPN Quarterly Journal are open source publications entirely managed and staffed by patients and caregivers with the volunteer participation of scientists, hematologists and healthcare providers. With 12,000+ monthly readers, MPNforum is the most widely followed independent international on-line monthly magazine focused on myeloproliferative neoplasm patients and caregivers.
Blood & Marrow Transplant Information Network (BMT InfoNet) is not-for-profit 501(c)3 organization dedicated to providing transplant patients, survivors and their loved ones with emotional support and high quality, easy-to-understand information about bone marrow, peripheral blood stem cell and cord blood transplants.