MPN Research Foundation
The MPN Research Foundation focuses on MPN cancer research, advocacy, and education by bringing together researchers, clinicians, and patients. The website provides education on MPN disease states, links to live and virtual MPN support groups, and information about clinical trials.
PV Reporter provides patients with up-to-date news on MPNs and informative articles to help patients better understand their condition. It also offers helpful links to support groups and MPN specialists.
NCCN Guidelines for Patients: Myeloproliferative Neoplasms
This interactive PDF flipbook offers a patient-centric breakdown of the NCCN Guidelines for Myeloproliferative Neoplasms, including an overview of MPN basics, a glossary and dictionary of acronyms, and treatment guides for each of the three types of MPN.
MPN Cancer Connection
MPN Cancer Connection supplies a comprehensive list of links to financial resources for patients with MPNs, including out-of-pocket costs, co-pay and medication assistance, airfare, and federal benefits.
MPN Symptom Assessment Form (SAF)
This form helps patients track 10 symptoms—early satiety, abdominal discomfort, inactivity, problems with concentration, numbness/tingling (in hands/feet), night sweats, itching, bone pain, fever (>100°F), and unintentional weight loss in the last 6 months. Consider incorporating this tool into your practice as a way to assess and monitor MPN-specific side effects in a standardized way.
Through this social network, patients with MPNs provide each other with emotional support, practical advice, and insights on managing treatment or therapies for myeloproliferative neoplasms.
Patient Power: MPNs
Patient Power is a patient empowerment network packed with a variety of up-to-date resources and information for MPN patients, including written and video content featuring MPN experts, a clinical trial search, and a glossary of terms specific to MPNs. The network also hosts publishes cutting-edge data reported live from the American Society of Hematology annual meeting each year. All content is free but requires log-in.
Voices of MPN
Sponsored by Incyte Corp., Voices of MPN provides a number of valuable resources for patients navigating an MPN diagnosis, including disease state diagnosis, symptoms, and treatment options education and empowering patient stories. The site also offers Tracker Tools that help patients track changes in symptoms or disease course and share them with their physician.
MPN Clinical Trials on ClinicalTrials.gov
Clinical trials are always a great option for MPN patients, and there are many studies currently enrolling patients. Take a look at clinicaltrials.gov to see if your patient qualifies for any ongoing trials, and discuss them as a potential treatment option.
Building Blocks of Hope: MPN edition
This downloadable PDF helps educate patients with MPNs and caregivers about the basics of disease state pathophysiology, diagnostic processes, symptoms of the disease, and treatment options and provides patient-focused resources for social support. A smartphone app version is also currently in development.
MPN Patients and COVID-19
The MPN Research Foundation has curated COVID-19 guidance and resources to help MPN patients, including FAQs, recommendations for managing anxiety and self-care, and financial resources.
COVID-19 and Myeloproliferative Neoplasms: Frequently Asked Questions
This American Society of Hematology resource provides information for clinicians related specifically to treating MPN patients in light of the novel coronavirus, including decreasing the risk of infection and deciding whether to alter MPN treatment for COVID-19–positive patients.