The mission of the MPN Research Foundation is to stimulate original research in pursuit of new treatments — and eventually a cure — for the blood cancers polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).

Through a combination of MPN cancer research, advocacy and education, we bring together patients, researchers and clinicians around the common goal of realizing new treatment options and ultimately, a cure for MPNs.

www.mpnresearchfoundation.org

Patient Power is an organization that connect patients and their care partners to an active and knowledgeable community of cancer experts and patient advocates across a wide range of cancers, including essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). Its aim is to help patients and care partners feel more empowered to advocate for themselves. Through video interviews, online forums, blogs and webcasts, Patient Power covers everything from the latest research and treatment news to patient stories and strategies for coping with cancer in everyday life.

patientpower.info

The Myeloproliferative Neoplasms Research Consortium (MPN-RC) is an inter-active group of laboratory scientists, clinical scientists, and a biostatistics team, who work in coordination to develop and evaluate treatments that will improve the survival of patients with myeloproliferative neoplasms (MPN). The overall goal of the MPN-RC is to merge the skills and efforts of its scientifically diverse membership to generate the scientific foundation for novel therapeutic strategies which will be evaluated in rigorous, well- constructed independent investigator-initiated clinical trials.  The MPN-RC, formerly MPD-RC, opened its first trial over a decade ago. Investigators from over 30 institutions in the US, Canada, Europe, and Israel had treated over 300 patients diagnosed with myelofibrosis, polycythemia vera, thrombocythemia, and acute myeloid leukemia. Currently, the MPN-RC has investigators in 11 institutions around the US and in Canada.

mpn-rc.com

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.

https://www.cancersupportcommunity.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.

https://www.cancercare.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.

http://www.crt.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.

http://www.lls.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 300 rare disease organizations are members of NORD.

https://rarediseases.org/

The Aplastic Anemia and MDS International Foundation (AAMDSIF) supports, connects and educates patients, caregivers and health professionals on bone marrow failure diseaseAAMDSlogo_fullcolor_horizontals, 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.

http://www.aamds.org/

OTHER LINKS:

• YouTube – https://www.youtube.com/user/AAMDSIF
• Online Academy – https://www.pathlms.com/aamdsif
• Community Connection Support Groups – http://www.aamds.org/support/community-events/communities
• Patient and Family Conferences – http://www.aamds.org/education/conferences/patients

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.

December, 2017 …The ASH issue