MPN Research Foundation
@MPN_RF
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We’re a global research foundation stimulating research in pursuit of new treatments, & eventually a cure, for PV, ET, & MF. #mpnsm
Chicago, IL
Joined October 2010
MPN PROGRESSion Registry™ is OPEN for enrollment! Join the patient-focused research initiative and share your health journey over time. We’re stronger together — individual drops of data can make an ocean of change for MPN research. https://t.co/mUQQZCQk1M
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How does informed consent work for the MPN PROGRESSion Registry™? We provide complete, transparent information on the research risks, benefits, and details, so you can decide what's right for you. Watch the video & enroll today! https://t.co/rCVEna97QD
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Ever wondered how clinical trials are designed or how YOU can help shape them? Join our free webinar: Clinical Trial Protocol 101 🗓 Nov 20 | 🕔 5–6pm CT 🎙 Jane Perlmutter, Ph.D., MBA ✅ Register now: https://t.co/ZRCsSXGTGn
#MPNPathways #ClinicalTrials
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MPN PROGRESSion Registry™ is OPEN! 18 or older? Live in the US? Ever been diagnosed with an MPN? Enroll in our new patient-focused study, that collects patient health data over time to expand our understanding of MPNs. Learn more and enroll today! https://t.co/mUQQZCQk1M
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MPN PROGRESSion Registry™ is almost here! Can it be trusted with your data? YES! The Registry has rigorous oversight. All data is highly secure, HIPAA compliant, meets @NIH standards for privacy & confidentiality, and no identifying information will ever be shared for research.
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Can registries change research? Enroll-HD helped uncover new genetic modifiers in #HuntingtonsDisease. “If you have the numbers and you have the samples, you can do great things.”—Dr. Simon Noble, @CHDIFoundation MPNs are next. MPN PROGRESSion Registry™ launches soon!
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We raised over $100,000 this #BloodCancerAwareness Month to research #myeloproliferativeneoplasms – rare, misunderstood, and under-funded cancers that start in the bone marrow. If you donated, see if your employer will double it: https://t.co/7UBGehgyqb
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IIt’s almost here! By safely & securely collecting health data from U.S. patients living with MPNs, we’re helping researchers build knowledge, unlock better treatments and, one day, find cures. MPN PROGRESSion Registry™ launches soon. Watch for updates & opening announcements.
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As #BloodCancerAwareness Month comes to a close, we want to say thank you. Thank you for standing up for #MPN patients, when others don’t. https://t.co/fzniWnLWFZ
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Did you know? It can cost a billion dollars and take up to 15 years to research and develop just ONE life-saving cancer drug. We’re laser-focused on innovative #MPNresearch, when no one else is. Join us before #BloodCancerAwarenessMonth ends https://t.co/fzniWnLWFZ
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What if AI could spot the earliest signs of disease progression long before symptoms change? For patients with #myeloproliferativeneoplasms, this kind of insight would be priceless. This #BloodCancerAwareness Month, will you help fund the research? https://t.co/fzniWnLWFZ
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For researchers like Dr. @KralovicsRober4, the question that keeps him up at night isn’t how to cure cancer. It’s how to fund the research. “MPN was so off the radar,” he explains. “I always had to explain why it matters.” #BloodCancerAwareness #MPNAwareness
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Nearly 4 in 5 #MPN patients say that slowing progression is their biggest concern. We hear you — and we’re funding research to find answers. Please, join us and make an investment in #MPNresearch today. https://t.co/fzniWnLWFZ
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#MPNs affect 300,000+ in the U.S. — yet still fly under the radar. This #BloodCancerAwarenessMonth, help bridge the gap. 💬 Reply with your MPN type 🔁 RT to raise awareness 📖 Share your journey Every voice helps change the story. #MPNs #BCAM2025
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GLP-1 drugs like Ozempic may reduce risk of MPNs & MDSs — two rare blood cancers. Retrospective data from 1.6M+ T2D patients offers new research clues. Study by @ClevelandClinic 's Dr. Abhay Singh in @JAMANetworkOpen Dr. Singh interview: https://t.co/rHM0LymTUp
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How is a patient registry different from a treatment trial? A treatment trial tests new therapies in your care to see if they are safe and effective. A registry is an observational study, collecting information about health over time helping researchers understand larger trends.
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MPN researcher and PV patient Tyler Parsons, PhD, applies his unique, dual perspective to the forthcoming MPN PROGRESSion Registry. Tyler's dual role on the Steering Committee and Patient Engagement Advisory Council (PEAC), ensures the patient voice remains central to research.
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Cancer researchers are mobilizing the immune system against the CALR mutation in MPNs. 💉 Testing peptide vaccines 🧬 Engineering mutant CALR-specific CAR T cells 🧪 Developing bispecific antibodies #CALRmutation #MPNresearch #Immunotherapy #RareCancer #CancerImmunology
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Proud to support this Blood cover study, funded in part by @MPN_RF, uncovering CD24 as a target to restore neutrophil clearance & prevent myelofibrosis. #MPNResearch #BloodCancer
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Don’t miss our upcoming webinar! MPN Pathways: Empowered Voices in Research - Session 5: Patient & Caregiver Voices in Research 🗓 Thursday, August 14 | 5–6 PM CST 🔗 Register now: https://t.co/DpLucVik1U #MPN #PatientAdvocacy #MPNVoices
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