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mpnrf.bsky.social

@mpnrf.bsky.social
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mpnrf.bsky.social @mpnrf.bsky.social · 23/09/2026
Saturday is the 1st anniversary of MPN PROGRESSion Registry! THANK YOU to our 700+ participants; the clinicians, researchers & partners helping spread the word; and sponsors for making this study possible. We're just getting started! goto.mpnresearchfoundation.org/4dP
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mpnrf.bsky.social @mpnrf.bsky.social · 18/09/2026
MPN Progression Research Network authors published a paper in Leukemia: ‘Defining and predicting disease progression in myeloproliferative neoplasms: a proposed biomarker-driven approach’ Open access via @MPNResearchFoundation www.mpnresearchfoundation.org/progr…
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mpnrf.bsky.social @mpnrf.bsky.social · 11/09/2026
The FDA has approved BESREMi® (ropeginterferon alfa-2b) for adults with essential thrombocythemia (#ET), marking the first new FDA-approved treatment option for ET in nearly 30 years!  Read more: www.fda.gov/drugs/news-events-human…
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mpnrf.bsky.social @mpnrf.bsky.social · 03/09/2026
Reliable MPN information empowers patients to ask questions, understand their options and take a more active role in their care.  One year ago, we launched You and MPN, a free resource for people affected by ET, PV and MF: www.YouandMPN.com #MPNAwarenessDay #MPN
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mpnrf.bsky.social @mpnrf.bsky.social · 02/09/2026
#BloodCancerAwarenessMonth starts today.  Help us raise awareness this month for #MPNs and #MPNAwarenessDay on Sept 10th.  www.mpnresearchfoundation.org/donat…
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mpnrf.bsky.social @mpnrf.bsky.social · 26/08/2026
We’re celebrating the year anniversary of the MPN PROGRESSion Registry® by holding our first participant gift card raffle! Two fully enrolled patients will win $150 gift cards in a randomized drawing. We appreciate your participation for PROGRESS. goto.mpnresearchfoundation.org/4gAb…
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mpnrf.bsky.social @mpnrf.bsky.social · 20/08/2026
Not sure how MPN PROGRESSion Registry® enrollment works? We've created two new resources to help make joining easy to navigate: our guided enrollment video and companion PDF guide. Visit - goto.mpnresearchfoundation.org/3U5q… and enroll today!
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mpnrf.bsky.social @mpnrf.bsky.social · 11/08/2026
Fatigue, itching, night sweats, brain fog, bone pain. Many MPN symptoms are invisible but can have a major impact on daily life. By completing the MPN-10 in the MPN PROGRESSion Registry®, you help track symptom changes over time and advance MPN research. Join today.
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mpnrf.bsky.social @mpnrf.bsky.social · 29/07/2026
By completing 5 patient-reported outcome (PRO) surveys, you'll help researchers better understand symptoms and quality of life beyond standard lab tests. Join and make your voice count.
goto.mpnresearchfoundation.org
MPN Progression Registry® — MPN Research Foundation – Research Foundation funding MPN Research
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mpnrf.bsky.social @mpnrf.bsky.social · 28/07/2026
The July edition of Under the Microscope hit your inboxes at 5PM CT today! Join our community to receive these stories and so much more with this link:
goto.mpnresearchfoundation.org
Subscribe to Our Newsletter — MPN Research Foundation – Research Foundation funding MPN Research
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mpnrf.bsky.social @mpnrf.bsky.social · 22/07/2026
Patient-reported outcomes (PROs) give patients a means to report symptoms, quality of life, and disease impacts. Answers can reveal insights beyond standard tests or exams, which is why 5 PROs are included in the MPN PROGRESSion Registry®.   goto.mpnresearchfoundation.org/4wfS…
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mpnrf.bsky.social @mpnrf.bsky.social · 30/06/2026
The June edition of Under the Microscope hit your inboxes at 5PM CT today! Join our community to receive these stories and so much more with this link:
goto.mpnresearchfoundation.org
Subscribe to Our Newsletter — MPN Research Foundation – Research Foundation funding MPN Research
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mpnrf.bsky.social @mpnrf.bsky.social · 29/06/2026
We are happy to announce Calytrix Bio has signed on as a new MPN PROGRESSion Registry® sponsor. Their support helps make this important, long-term, observational research possible. Our sincere thanks!   Enroll today: f.mtr.cool/vkdsgqtngr
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mpnrf.bsky.social @mpnrf.bsky.social · 26/06/2026
How do clinical trials measure success?  Endpoints — the outcomes used to judge whether a treatment works.  MPN Research Foundation leads discussions on meaningful endpoints in #MPNs. Follow us to learn more: f.mtr.cool/dsywhcyxqf #ClinicalTrials #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 25/06/2026
Congratulations to Prof. Claire Harrison on receiving the @EHA_Hematology Lifetime Achievement Award. A leading MPN researcher, she has advanced key science, led global trials, and serves as co‑founder of #MPNVoice & trustee of @bloodcancer_uk. 
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EHA Lifetime Achievement Award - The European Hematology Association (EHA)
The EHA Lifetime Achievement Award​ is awarded for an extraordinary lifetime contribution to the field of hematology​.
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mpnrf.bsky.social @mpnrf.bsky.social · 24/06/2026
Do you have anemia of myelofibrosis or care for someone who does? Help inform future MPN research by completing a 30–45 min online questionnaire. Qualified participants receive a $100 gift card. Learn more: smathias@healthoutcomessolutions.com
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mpnrf.bsky.social @mpnrf.bsky.social · 16/06/2026
A Phase 3 clinical study from Italfarmaco is now enrolling adults with polycythemia vera (PV) to evaluate an investigational treatment.  A study doctor can help determine eligibility. Participation is voluntary.  Learn more: f.mtr.cool/ivmlznwcpb
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mpnrf.bsky.social @mpnrf.bsky.social · 11/06/2026
Feeling overwhelmed by scientific slides or abstracts?  Join us next week for our new MPN Pathways webinar with Amielle Moreno, PhD and Tyler Parsons, PhD to learn more.  June 18 | 5 – 6pm CT  Virtual  Register: f.mtr.cool/koixymtunj #MPNPathways #ResearchEducation
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mpnrf.bsky.social @mpnrf.bsky.social · 09/06/2026
Dana shares her journey with PV — diagnosis, challenges, and learning to advocate for herself. Watch and explore more: f.mtr.cool/usmmcielyd
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mpnrf.bsky.social @mpnrf.bsky.social · 04/06/2026
Grateful to @UChicago for welcoming us into the Drazer Group & HIM labs during the 2026 #MPNRoundtable. Early-stage research shows where progress in MPNs begins and how it moves forward through collaboration. Join us in moving research forward: f.mtr.cool/sqzvnrbvmg
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mpnrf.bsky.social @mpnrf.bsky.social · 01/06/2026
We recently rolled out a number of updates and improvements to the MPN PROGRESSion Registry® system to make it more user-friendly. Enrolled? Log into your portal to explore what’s new. Want to sign up? Enroll today:
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MPN PROGRESSion Registry™ – MPN Research Foundation
The MPN PROGRESSion Registry™ is a patient-focused research initiative that collects comprehensive, long-term, myeloproliferative neoplasm (MPN) patient health data.
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mpnrf.bsky.social @mpnrf.bsky.social · 30/05/2026
From one early grant supporting the MPN-RC to a global research consortium.  This is the ripple effect of funding collaboration and infrastructure.  Last chance — there is still time to give. Invest in research: f.mtr.cool/qegnjxucfd #MPN #CancerResearch @mpn_consortium
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mpnrf.bsky.social @mpnrf.bsky.social · 28/05/2026
Setting new standards in MPN clinical trials will move faster if we learn from what’s already working. At the 2026 MPN Roundtable™, we brought the #MPN community together to learn from progress in other malignancies and turn insight into action. #MPNResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 27/05/2026
Scientific presentations don’t have to feel inaccessible.  Join us for MPN Pathways: Empowered Voices in Research: Patients' & Caregivers’ Guide to Scientific Presentations. Register today: f.mtr.cool/ynqailytir #MPNPathways #MPNVoices #PatientEducation #RareDisease
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mpnrf.bsky.social @mpnrf.bsky.social · 26/05/2026
Why do some people develop #MPNs, while others never do? What we know so far comes from years of research.  Progress depends on funding science.  Your support makes research possible.  Invest in research: f.mtr.cool/bilbrgbjdf
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mpnrf.bsky.social @mpnrf.bsky.social · 26/05/2026
What defines meaningful progress in MPN research? Clinical endpoints and perspectives that shape them. At #MPNRoundtable, researchers, clinicians, industry partners, and patients convened to align on how progress is measured. Patient-informed science moves the field forward.
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mpnrf.bsky.social @mpnrf.bsky.social · 22/05/2026
Basic or pre-clinical research is the science that maps disease biology, tests ideas early, and identifies possible treatment targets. MPN Research Foundation is committed to this fundamental work.  Invest in research: f.mtr.cool/nhbbexsxgw #MPN #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 21/05/2026
People living with #polycythemia vera are invited to share their experiences in a brief, confidential survey conducted with The Harris Poll. Your input helps guide future research and support. Survey: f.mtr.cool/tksisypaxv #PV #MPNresearch
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mpnrf.bsky.social @mpnrf.bsky.social · 21/05/2026
Introducing our brand‑new publication: MPN Global Clinical Trial Insights. This digest offers accessible insights into MPN clinical research — including new studies, expanding trial sites, and an educational spotlight. Join our community to learn more: f.mtr.cool/jqpiatpwzc
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mpnrf.bsky.social @mpnrf.bsky.social · 18/05/2026
Research linking #MPNs, treatment, and skin cancer risk is helping doctors improve screening and prevention. Support the science protecting patients today and improving care tomorrow. 👉 Invest in research: f.mtr.cool/ddydwhgvxe #BloodCancer #SkinCancerAwareness
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mpnrf.bsky.social @mpnrf.bsky.social · 13/05/2026
MPN clinicians in the US: Have you requested your free Outreach Materials + Swag Kit for MPN PROGRESSion Registry® yet? Send us an email and we’ll ship one out -  mpnprogressionregistry@mpnrf.org.
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mpnrf.bsky.social @mpnrf.bsky.social · 12/05/2026
For our founder Bob Rosen, MPN progression wasn’t abstract — it was personal. He didn’t live to see the Registry® launch, but it carries his vision forward. Invest in research: f.mtr.cool/iawtodjtxd #MPN #BloodCancer #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 11/05/2026
The FDA has approved ruxolitinib extended‑release (Jakafi XR™), a once‑daily tablet for adults with #myelofibrosis and #polycythemiavera. Ongoing research helps clarify how new formulations may fit into MPN care. #MPNs #MPNresearch
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mpnrf.bsky.social @mpnrf.bsky.social · 09/05/2026
Milestone reached! 500+ patients enrolled in MPN PROGRESSion Registry®! During Founder’s Week, no less. The achievement belongs to our entire community. Thank you for your trust, time, and dedication. Stay tuned! It’s only the start of our work toward PROGRESS over Progression.
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mpnrf.bsky.social @mpnrf.bsky.social · 06/05/2026
Legacy isn’t just what you leave behind — it’s what continues to grow.  Today we honor our founder, Bob Rosen, and the mission he built.  Invest in research: f.mtr.cool/ojhsteodjt #MPN #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 04/05/2026
We are led by those we’ve lost and by what they inspire us to build next. Tribute gifts honor loved ones while fueling research that moves the MPN field forward.  Invest in research: f.mtr.cool/xedbgilpcr  #MPN #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 29/04/2026
Governance and transparency are core to MPN PROGRESSion Registry®. Independent IRB oversight, HIPAA‑compliant data protections, scientific & patient committee guidance, and careful data‑use review keep research ethical, secure, and patient‑focused. f.mtr.cool/wiwzvrxvlf
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mpnrf.bsky.social @mpnrf.bsky.social · 27/04/2026
“They tried to support grants which were risky — work that probably wouldn’t be funded elsewhere.”  – Josef T. Prchal, MD  That courage built MPN Research Foundation.  👉 Invest in research: f.mtr.cool/akotfrwhrc #MPN #CancerResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 25/04/2026
New MF education module now live!  Animations, expert videos, patient stories, and shareable visuals make MF easier to understand for the MPN community.  Explore the module → f.mtr.cool/ekzfpmopkw #MF #myelofibrosis #MPN
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Understanding and Diagnosing Myelofibrosis (MF)
This animation helps you understand myelofibrosis (MF), a type of myeloproliferative neoplasm (MPN) in which scar tissue builds up in the bone marrow and interferes with normal blood cell production. You'll learn how MF develops, the role of gene mutations such as JAK2, CALR, and MPL, and the difference between primary and secondary MF. The animation also explains common symptoms, how MF can affect organs like the spleen, how doctors confirm the diagnosis through blood tests and bone marrow biopsy, and what to expect after diagnosis.
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mpnrf.bsky.social @mpnrf.bsky.social · 24/04/2026
We remember Dr. Richard T. Silver, MD, a foundational leader in the myeloproliferative neoplasm (MPN) field. @CRTFund @weillcornell.bsky.social  Read our full tribute here: f.mtr.cool/hpxpiqnmcs
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mpnrf.bsky.social @mpnrf.bsky.social · 17/04/2026
New PV education module now live!  Animations, expert videos, patient stories, and shareable visuals make PV easier to understand for the MPN community.  Explore the module → f.mtr.cool/mfydvdfmhc #PV#polycythemiavera #MPN
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Understanding and Diagnosing Polycythemia Vera (PV)
This animation helps you understand polycythemia vera (PV), a type of myeloproliferative neoplasm (MPN) in which the bone marrow produces too many red blood cells. You'll learn how blood cells are made and why having too many red blood cells can thicken the blood, increasing the risk of clots (which can cause heart attacks, strokes, or leg blockages), bleeding problems, and an enlarged spleen. The animation also covers key signs and symptoms, the role of the JAK2 mutation, blood tests, bone marrow biopsy, and steps you can take after diagnosis.
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mpnrf.bsky.social @mpnrf.bsky.social · 13/04/2026
Dr. Janeana White is a physician, parent, and Patient Engagement Advisory Council member. She helps keep the MPN PROGRESSion Registry® focused on patients.  Take part in progress and enroll with Janeana. “You’ll be helping at the cutting edge.” Link:
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MPN PROGRESSion Registry™ – MPN Research Foundation
The MPN PROGRESSion Registry™ is a patient-focused research initiative that collects comprehensive, long-term, myeloproliferative neoplasm (MPN) patient health data.
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mpnrf.bsky.social @mpnrf.bsky.social · 10/04/2026
New ET education module now live!  Animations, expert videos, patient stories, and shareable visuals make ET easier to understand for the MPN community.  Explore the module → f.mtr.cool/hkzrbiqkgt #ET #EssentialThrombocythemia #MPN
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Understanding and Diagnosing Essential Thrombocythemia (ET)
This animation helps you understand essential thrombocythemia (ET), a type of myeloproliferative neoplasm (MPN) in which the bone marrow makes too many platelets. You'll learn how blood cells are produced, why excess platelets can lead to clotting or bleeding complications, and what symptoms to watch for. The animation also explains common genetic mutations such as JAK2, CALR, and MPL, how doctors confirm the diagnosis through blood tests and bone marrow biopsy, and what care may look like going forward.
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mpnrf.bsky.social @mpnrf.bsky.social · 07/04/2026
Fascinating research out of Italy by Biagioli et al.: Self-care in MPNs depends on more than engagement. The research shows improved outcomes when resources build self-efficacy — a patient’s confidence that they can manage their care. Learn more here: f.mtr.cool/ieylqlxvji #MPN #MPNResearch
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mpnrf.bsky.social @mpnrf.bsky.social · 31/03/2026
The March edition of ‘“Under the Microscope’” will hit your inboxes at 5PM CT today! Join our community to receive these stories and so much more with this link:
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Subscribe to Our Newsletter – MPN Research Foundation
Sign up to join our MPN Research Foundation community to receive our monthly e-newsletter, Under the Microscope, our print Newsletter, and other timely communications about what’s happening in the MPN community, including:
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mpnrf.bsky.social @mpnrf.bsky.social · 31/03/2026
NEW! We’ve expanded You and MPN, our animated education program, with full modules on ET, PV, and MF. Each module includes short videos, expert FAQs, and patient stories to help you navigate your diagnosis confidently.   Explore: f.mtr.cool/juwcftdeat #MPN #PatientEducation
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You and MPN
This resource is intended for patients with myeloproliferative neoplasms, caregivers, and those who are interested in learning about myeloproliferative neoplasms. You will find expert advice about myeloproliferative neoplasms to help you discuss key issues with your healthcare provider and make important decisions related to management and treatment. Easy-to-understand animations with audio narration, expert video explanations, patient experience videos, slide shows, and educational downloads are available to you.
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mpnrf.bsky.social @mpnrf.bsky.social · 20/03/2026
🌟 A heartfelt thank you to @pharmaessentia.bsky.social  our newest industry sponsor of the MPN PROGRESSion Registry™. Your support helps make this long-term, observational research possible, and we are very appreciative! 🌟 👉 Enroll today: f.mtr.cool/paojnxxahc
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mpnrf.bsky.social @mpnrf.bsky.social · 20/03/2026
Congratulations to @mullallylab.bsky.social and colleagues on a new study clarifying risk in TP53-mutated #MPNs. By defining key factors that shape disease course, this work supports more informed monitoring. Learn more here: f.mtr.cool/stzyrutxoc #MPNresearch #bloodcancer
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mpnrf.bsky.social @mpnrf.bsky.social · 10/03/2026
One week left! Join us March 19, 4pm CT for “Informed Consent”. This MPN pathways webinar explores the meaning of informed consent for patients in clinical trials, featuring Emily Largent, JD, PhD, RN. Register: f.mtr.cool/ulvqvdidpa
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mpnrf.bsky.social @mpnrf.bsky.social · 09/03/2026
Final reminder for MPN patients: The 2026 MPN Patient Unmet Needs Assessment closes March 18. If you haven’t yet shared your experience, your voice can still make an impact. 🕒 About 25 minutes 👉 Participate here: f.mtr.cool/zqdouovnhb
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