MPN Research Foundation

MPN Research Foundation Patient-centric foundation that exists to fund research & improve outcomes for those living with MPNs Driving groundbreaking research. Improving lives.

Founded by patients for patients, MPN Research Foundation is a catalyst for research funding in pursuit of new treatments – and eventually a cure – for polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) – blood cancers collectively known as myeloproliferative neoplasms (MPNs). To date, we have funded more than $18 million in MPN research. Through a combination of MPN c

ancer research, advocacy and education, we bring together patients, researchers, and clinicians around the common goal of realizing new treatment options and ultimately, a cure for MPNs.

It starts with science, but it is strengthened by the perspectives of those living with these diseases. At this year’s M...
05/25/2026

It starts with science, but it is strengthened by the perspectives of those living with these diseases.

At this year’s MPN Roundtable™, conversations focused on a critical topic in myeloproliferative neoplasms (MPNs): clinical endpoints, and how we define and measure progress in research.

By bringing researchers, clinicians, biopharmaceutical industry partners, patients and caregivers together, we help ensure the science reflects what matters most: advancing understanding and shaping future outcomes.

This is what makes MPN Research Foundation’s approach unique: patient-informed research that helps move the field forward, together.

👉 Join the effort to advance MPN research https://f.mtr.cool/xayamlhrky

Thank you to our sponsors that help make this event possible: Bristol Myers Squibb, Calytrix, GSK, Incyte, Italfarmaco, KartosTherapeutics, Karyopharm Therapeutics, MerckInvents, Novartis, PharmaEssentia, Sobi, Sumitomo Pharma Oncology, Takeda

New treatments usually start with learning more about the disease itself. This early work is called basic research or pr...
05/22/2026

New treatments usually start with learning more about the disease itself. This early work is called basic research or pre‑clinical research, and it’s where researchers learn how myeloproliferative neoplasms (MPNs) begin and change over time.

From the very start, MPN Research Foundation focused on this kind of science. Why? Because understanding the biology behind essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) is what makes smarter studies and better treatment options possible later on.

What that commitment has enabled:
• The Foundation has awarded more than $20 million in MPN research funding to date.
• We have over $1 million in planned investments this year alone.

Basic research doesn’t always make popular headlines, but it quietly shapes the breakthroughs that do. If you care about progress, you know “basic” doesn’t mean simple. It means building the foundation patients depend on.

Invest in research: https://f.mtr.cool/ffcsvhbukm

MPN Research Foundation is sharing an opportunity from The Harris Poll, an independent polling and insights firm, to lea...
05/21/2026

MPN Research Foundation is sharing an opportunity from The Harris Poll, an independent polling and insights firm, to learn more about the lived experiences of people diagnosed with polycythemia vera (PV) and live in the US.

This confidential, online survey takes approximately 20 minutes and invites individuals with PV to share their perspectives on the physical, emotional, and practical impact of living with the disease — as well as the support and resources that matter most. Responses are kept strictly confidential and reported only in total to protect participant privacy.

Understanding the real‑world experience of people living with PV is essential for informing future research, improving study design, and ensuring that patient priorities remain central.

Please note: the survey must be completed in one sitting, as responses are saved only upon final submission.

Take the survey: https://f.mtr.cool/eyknjytvuk

Questions? Contact SurveyHelpC@harrispollresearch.com

MPN Research Foundation does not endorse any specific treatments or trials. We raise awareness of relevant research opportunities while remaining neutral and mission‑focused.

We’re pleased to launch our MPN Global Clinical Trial Insights Digest. This digest will provide a clear, accessible over...
05/20/2026

We’re pleased to launch our MPN Global Clinical Trial Insights Digest.

This digest will provide a clear, accessible overview of current clinical trial activity across myeloproliferative neoplasms (MPNs), including newly opened studies, expansions that increase access, and insights to support patients, caregivers, researchers/clinicians, and the biopharma community.

In this inaugural issue, you’ll find:
• current trial trends across MPN research
• an educational spotlight on clinical trials “opening” and “expanding”
• helpful resources to learn more about active studies
• and opportunities for patients, caregivers, healthcare professionals, and industry to learn more.

Join our community to receive this digest: https://f.mtr.cool/ujkiiejpsg

Did you know that research is revealing important connections between MPNs, treatment, and skin health? These insights m...
05/18/2026

Did you know that research is revealing important connections between MPNs, treatment, and skin health? These insights matter for everyday care.

What researchers are learning:
• People with MPNs may have a higher risk of non‑melanoma skin cancers.
• Some commonly used MPN treatments can affect immune function or increase sensitivity to sunlight.
• Certain skin cancers seen in MPN patients may behave differently, making early screening especially important.

Your support helps ensure that complex, cross‑disciplinary questions in MPNs continue to be asked — and answered.

Invest in research: https://f.mtr.cool/eivcemczyl

Sources:
Landtblom et al., 2018 (https://f.mtr.cool/coulrduzwb )
Rampotas et al., 2024 (https://f.mtr.cool/gnnudwvrum )
Starace et al., 2024 (https://f.mtr.cool/slupckbqkj )

05/13/2026

Myeloproliferative neoplasm (MPN) clinicians in the US:

Have you requested your free Outreach Materials + Swag Kit for the MPN PROGRESSion Registry® yet?

Our starter kit is designed to help you easily inform your MPN patients about this important longitudinal study that aims to help expand our understanding of MPNs and MPN disease progression.

Requesting a kit is easy! Just email us at mpnprogressionregistry@mpnrf.org with your clinic address & primary contact. We’ll ship one out to you.

We do not yet fully understand why a patient progresses along the spectrum from low to high risk myeloproliferative neop...
05/12/2026

We do not yet fully understand why a patient progresses along the spectrum from low to high risk myeloproliferative neoplasms (MPNs) or why one does not progress.

That unanswered question is why we launched the MPN PROGRESSion Registry®.

But this work also carries a deeply personal meaning for our community:

Our founder, Bob Rosen, lived with an MPN and understood the uncertainty of disease progression. Sadly, he passed away from complications following a bone marrow transplant before this question could be answered.

MPNs are complex and unpredictable. No two patients’ experiences are alike, and existing data is limited, hard to access, or missing key details. Researchers and clinicians still need clear biomarkers to mark when one MPN subtype evolves to another. Industry partners need better data to develop better treatment options.

We believe that disease progression is the next frontier for MPN research, and that the Registry will enable us to transform real‑world patient experience into research‑ready evidence.

The Registry is entirely funded by MPN Research Foundation and generous sponsors, making participation completely free. This is a long‑term project that carries Bob’s vision forward — and sustaining it will require the continued support of people who believe in the future he imagined.

Invest in research: https://f.mtr.cool/aweussofop

The U.S. Food and Drug Administration (FDA) has approved ruxolitinib extended‑release (Jakafi XR™), a new once daily for...
05/11/2026

The U.S. Food and Drug Administration (FDA) has approved ruxolitinib extended‑release (Jakafi XR™), a new once daily formulation of the JAK inhibitor ruxolitinib, for adults with myelofibrosis (MF) and polycythemia vera (PV).

Ruxolitinib has long been a cornerstone therapy for people living with select myeloproliferative neoplasms (MPNs). This new extended‑release tablet is designed to provide sustained JAK inhibition over 24 hours while allowing for once‑daily dosing. For some patients, dosing schedules and treatment burden are important considerations alongside efficacy and safety.

Regulatory milestones like this reflect continued evolution in how approved therapies can be delivered and underscore the importance of ongoing research, regulatory review, and post‑drug-approval studies to better understand real‑world impact for patients and clinicians.

Read more here from Incyte: https://f.mtr.cool/itavavwehu

05/09/2026

Major milestone reached!!

We’re excited to announce that we have enrolled over 500 myeloproliferative neoplasm (MPN) patients in the MPN PROGRESSion Registry® as of this week, an achievement that seems especially meaningful as we simultaneously celebrate our MPN Research Foundation Founder’s Week.

We are proud of this achievement, and grateful to this first group of patients who’ve given us their time and trust, and chosen to participate. Thanks also to our broader community of patients and caregivers, clinicians and researchers, biopharmaceutical partners, community advocates, and the dedicated members of our advisory committees. Your partnership and continued belief in this work make it possible.

Stay tuned! We have lots of work to do, and this is just the beginning.
----------------
Thank you to our MPN PROGRESSion Registry® sponsors: Sobi, Karyopharm, PharmaEssentia, and GSK

Today is Founder’s Day. Bob Rosen would have been 83 today. We honor the legacy he built and the mission that continues ...
05/06/2026

Today is Founder’s Day.

Bob Rosen would have been 83 today. We honor the legacy he built and the mission that continues because of it.

After being diagnosed with polycythemia vera (PV), Bob saw a research landscape with few answers and little momentum. So he did something rare: he walked away from his career and built a Foundation devoted entirely to accelerating discovery for people living with myeloproliferative neoplasms (MPNs).

Bob didn’t live to see all the progress his vision helped unlock. But his belief that patients deserve better, and that science needs early investment to move forward still guides this work every day.

Founder’s Day reminds us why we do this.

Legacy isn’t what you leave behind. It’s what you build that carries forward.

Invest in research: https://f.mtr.cool/asizvxrbzz

As Founder’s Day approaches, we pause to remember the people whose lives and losses continue to guide our mission. To da...
05/04/2026

As Founder’s Day approaches, we pause to remember the people whose lives and losses continue to guide our mission.

To date, our community has made over 11,000 tribute gifts in honor of loved ones impacted by myeloproliferative neoplasms (MPNs). Each one represents remembrance, love, and a shared determination to change what it means to live with these diseases.

Tribute gifts do more than look back. They help move research forward, supporting scientists who are working to understand why some MPNs progress, how rare mutations behave, and how care can become more personalized.

We are led by those we’ve lost. And we honor them by building what comes next.

Invest in research: https://f.mtr.cool/hptdutpzqa

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Chicago, IL
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