iiinova — where your digital self keeps evolving

mpnrf.bsky.social @mpnrf.bsky.social · 06/10/2026

Blood Cancer Awareness Month may be over, but the work continues. Thank you to the organizations that supported MPN Research Foundation's awareness and research initiatives, including You & MPN and the MPN PROGRESSion Registry®. Together, we're moving #MPN research forward ❤️

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mpnrf.bsky.social @mpnrf.bsky.social · 02/10/2026

Congratulations to Brian R and Karen M, winners of our 1st MPN PROGRESSion Registry® participant appreciation drawing! Each received a $150 prepaid gift card. More to come.

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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 · 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 · 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 · 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 · 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 · 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 · 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 · 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 · 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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mpnrf.bsky.social @mpnrf.bsky.social · 07/03/2026

#MPNnurses: Your expertise helps MPN patients feel in control, even when questions and worries about disease progression create uncertainty. Help share an opportunity with your patients that empowers them to contribute directly to future MPN research: f.mtr.cool/drovejabfs

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mpnrf.bsky.social @mpnrf.bsky.social · 03/03/2026

Living with an #MPN? Your experience can help shape future research, education & advocacy around the world. The 2026 MPN Patient Unmet Needs Assessment is open worldwide until March 18, 2026. 🕒 ~25 min 👉 Take the survey: f.mtr.cool/iwedwepxjw

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mpnrf.bsky.social @mpnrf.bsky.social · 28/02/2026

Today is #RareDiseaseDay! Together, we’ve raised over $77,000 to advance MPN research but there’s still time to make an impact. Join us and donate today: f.mtr.cool/zhzplxvjry #MPN #SupportResearch #Donate

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mpnrf.bsky.social @mpnrf.bsky.social · 27/02/2026

You’ve been thinking about enrolling in the MPN PROGRESSion Registry™ and want to know: Can it be trusted? Will my data be safe? We are committed to protecting your privacy and ensuring your data is secure. LEARN MORE: f.mtr.cool/pnnpuxqrln

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mpnrf.bsky.social @mpnrf.bsky.social · 24/02/2026

95% of rare diseases lack FDA-approved treatments. Clinical trials are key — but most patients never hear about them. This #RareDiseaseDay, help close the gap. Donate today: f.mtr.cool/veomroddqs #MPN #SupportResearch #Donate

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mpnrf.bsky.social @mpnrf.bsky.social · 23/02/2026

Ever wondered what “informed consent” really means? Join us March 19, 4–5pm CT for an MPN Pathways session on how consent works in clinical trials and how patients can help improve the process. Register: f.mtr.cool/ulvqvdidpa

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mpnrf.bsky.social @mpnrf.bsky.social · 19/02/2026

Heart issues can signal undiagnosed blood cancer. John thought stress caused his heart attack — until a biopsy revealed ET, a rare blood disease. This #AmericanHeartMonth, help us fund research so patients get answers sooner. 👉 Donate today: f.mtr.cool/kmpmtxnvuc

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mpnrf.bsky.social @mpnrf.bsky.social · 17/02/2026

The 2026 #MPNChallenge™ is here! We’ve already invested over $20M in high-risk, high-reward research to accelerate breakthroughs in ET, PV & MF and we’re not done yet. Join our community & stay informed. 👉 Subscribe here: f.mtr.cool/etmbcodmjc

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mpnrf.bsky.social @mpnrf.bsky.social · 14/02/2026

Fewer patients. More questions. For #MPNs, gaps in data mean delayed answers and care. This #RareDiseaseMonth, help move science forward. Donate today: f.mtr.cool/pmvtnkoejx

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