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://goto.mpnresearchfoundation.org/4hA6OAE

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://goto.mpnresearchfoundation.org/48KyxMQ
#MPNPathways #ClinicalTrials

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://goto.mpnresearchfoundation.org/3VSmaqq

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.

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!

We raised over $100,000 this #BloodCancerAwareness Month to research #MPNs — rare, misunderstood, and under-funded cancers that start in the bone marrow. 

If you donated, see if your employer will double it: https://mpnresearchfoundation.org/employer-match-double-your-donation/

It’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.

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://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

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. 

Join us before #BloodCancerAwarenessMonth ends https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

What if AI could spot the earliest signs of disease progression long before symptoms change? For patients with #MPNs, this kind of insight would be priceless. 

This #BloodCancerAwareness Month, will you help fund the research? https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

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

Today on #MPNAwarenessDay we honor the power of partnership. Together we’re building brighter futures for MPN patients. 

Fuel discovery. Donate today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

#BloodCancerAwareness #MPNResearch

“[My father] thought he had an autoimmune disorder, we didn’t know he had PV, or that it was a blood cancer, until it was too late.” — Sarah from California. This #BloodCancerAwareness Month, don’t delay, fund research today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

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://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/

#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

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.

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.

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

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

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://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA 

#MPN #PatientAdvocacy #MPNVoices

August is Make a Will Month — the perfect time to protect what matters most and plan for the future. This year, consider including MPN Research Foundation in your will, trust, or estate plan. 

Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit

The August edition of ‘“Under the Microscope’” hit your inboxes at 5PM CT today!  
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/

Thousands of employers match charitable donations made by their employees, but most people never take advantage of it.  It only takes a minute to see if your employer matches - check today: 
https://mpnresearchfoundation.org/donate-to-mpn-research/  

#EmployerMatch #DoubleYourDonation #MPNResearch

🧬 Essential thrombocythemia (ET) isn’t one-size-fits-all. 

Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.  

Know your mutation, know your path. 

#MPNAwareness #GeneticTesting #ET

🏆 Big moment for MPNs: PV research took the plenary stage at #ASCO2025. Dr. Andrew Kuykendall presented VERIFY trial results on rusfertide: 

✓ 62% maintained Hct <45% 
✓ Better symptom control 
✓ Fewer skin malignancies 

#MPNs #PVawareness #Rusfertide #VERIFYtrial

Patients and caregivers play a critical role in shaping the future of MPN research. Join us for an empowering session exploring how your voice can influence every stage of research & drug development. 

Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA#/registration

Dr. Gabriela Hobbs, MD repurposes clinical trials that better serve patients. Learn how she’s turning every tissue sample into progress.

Read more: https://mpnresearchfoundation.org/news/every-sample-every-step-how-dr-gabriela-hobbs-is-rethinking-the-transplant-journey-in-mpns/

#MPNs @MPNResearch

The Leukemia & Lymphoma Society (LLS) & MPN Research Foundation unite to provide clinical trial nurse navigation support. 

Get support today: https://mpnresearchfoundation.org/mpn-clinical-trials/

#MPNs #ClinicalTrials #Hematology #Oncology #PatientSupport #MPNRF #LLS

📣 MPN Pathways: Empowered Voices in Research Webinar 
Session 5: Patient and Caregiver Voices in Research  

🗓 Aug 14 | 5–6 PM CST 

Featuring Patty Spears, BS, FASCO – leading cancer research advocate. 

🔗 Register: https://goto.mpnresearchfoundation.org/4knHgqZ 
 
#MPN #PatientAdvocacy #MPNVoices

MPNs are dynamic — new symptoms, changing blood counts, spleen enlargement. 

Even subtle shifts may raise the risk of disease progression, which looks different from patient to patient. Symptom tracking matters. 

#MPNs #RealWorldEvidence #Myelofibrosis #PV #ET @MPNResearch