MPN Research Foundation

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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 cancer 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.

02/17/2026

The 2026 MPN Challenge™ is underway! MPN Research Foundation’s signature funding initiative accelerates innovative, patient-focused research in essential thrombocythemia (ET), polycythemia vera (PV) & myelofibrosis (MF).

Since 2013, MPN Challenge has:
✔ Catalyzed discoveries from biology to translational advances
✔ Led to 77% of projects published
✔ Allowed researchers to secure $52M+ in follow-on funding

We've already invested over $20M in research and we’re just getting started. Patients are waiting for answers, and the next breakthrough depends on what we do today.

Join our community & stay connected to what we will be funding this summer.

👉 Subscribe here: https://f.mtr.cool/wxqzknsloi

02/16/2026

We understand a rare blood cancer like a myeloproliferative neoplasm (MPN) can feel overwhelming, especially when the information out there is hard to follow or filled with medical jargon. That’s why we created You and MPN, an easy-to-navigate program that uses clear visuals and plain language to help you learn about your diagnosis and take an active role in your care.

Developed by MPN Research Foundation in partnership with Mechanisms in Medicine, this multimedia resource brings together everything you need to better understand your diagnosis and feel more confident managing your care.

👉 Explore the program at https://f.mtr.cool/ymwxklnswx

02/15/2026

Fewer patients. More questions. For rare diseases like ET, PV & MF, critical gaps remain:

✔ We don’t know the true number of patients
✔ We don’t fully understand disease progression

“Most cancer rates are tracked by a formal registry process that occurs in hospitals,” explains Dr. Ruben Mesa, MD, “But since most MPNs are diagnosed in an outpatient setting, some without a biopsy, current processes… are likely to underestimate cases.”

Patient registries provide long-term, real-world data that can help researchers discover important statistics, explain progression, and improve care.

This , help bring answers to patients. Your donation powers research and solutions.

👉 Donate here: https://f.mtr.cool/qlvasxuruw

02/10/2026

Medical students are taught, “When you hear hoofbeats, think horses — not zebras.” It’s a reminder to look for the most common explanation first.

For rare disease patients, that mindset often means years of uncertainty and delayed diagnoses.

This Rare Disease Month, you can help change that. Show your stripes and support MPN patients by:

✔ Giving to MPN research
✔ Fundraising
✔ Sharing your story
✔ Learning about MPNs

Rare Disease Day is February 28. Will you stand with us?

👉 Donate here: https://goto.mpnresearchfoundation.org/49SG78c

02/09/2026

2026 Global Patient Unmet Needs Assessment is open!

MPN Research Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide future research, improve resources, and highlights where unmet needs remain for those living with MPNs worldwide.

Topics include:
• MPN diagnosis & monitoring
• Therapies & clinical trials
• Symptoms & related conditions
• Access to information & resources
• Emotional health & quality of life

Take the assessment: https://f.mtr.cool/jnjzqrpwod

Preview 2024 assessment highlights: https://f.mtr.cool/nbskflcqym

Preliminary results will be shared in Summer 2026.

Please share widely — especially with international MPN communities — to help identify unmet needs worldwide.

02/06/2026

Options matter in chronic, rare blood cancers like myeloproliferative neoplasms (MPNs). When disease status or life circumstances change, having more than one path helps a care team personalize treatment instead of relying on a single approach.

Recently, the National Comprehensive Cancer Network (NCCN) announced an important update to its MPN clinical practice guidelines that affects people living with essential thrombocythemia (ET). The NCCN is a nonprofit alliance of leading cancer centers that develops widely used, evidence-based treatment guidelines. Doctors rely on these guidelines for day-to-day treatment decisions, and many insurers use them when they decide which treatments to cover.

In this update, the guidelines now name ropeginterferon alfa 2b njft (Besremi®) as a category 1 preferred treatment option for high-risk ET when:

👉 a person has not responded well enough to platelet lowering treatments
👉 their response to platelet lowering treatments has diminished over time

The FDA is still investigating and reviewing the use of ropeginterferon alfa 2b njft in ET. But the NCCN’s decision reflects strong clinical evidence and expert agreement that some people with ET may benefit from this option.

Interferon treatment is not new. It already plays a role in treating polycythemia vera (PV), another MPN. The new 2026 MPN guidelines give interferon a clearer and broader range of MPNs it may help treat.

This evolution in guidance shows how much we still need to learn about the biology within and between MPNs. The expansion of interferon use from PV to include ET reflects shared disease mechanisms across these related conditions and shows how existing treatments can support more personalized care as science advances. At MPN Research Foundation, we see this as a powerful example of careful research opening up more tailored options for people living with rare blood cancers.

If you live with an MPN, care for someone who does, or support MPN research, we invite you to follow MPN Research Foundation. Stay connected to guideline changes, new data, and opportunities to join a community that pushes for better options for people with essential thrombocythemia and other MPNs. https://f.mtr.cool/gfbtcsybis

02/05/2026

Rare Disease Day is Feb 28, a global day of unity for those living with rare diseases. This year’s theme: Equity.

What can equity look like for MPN patients?
✔ Quick, accurate diagnosis
✔ Access to expert care
✔ Trusted resources to advocate for themselves

Our 2024 Patient & Caregiver Unmet Needs Assessment revealed these gaps:
- 30% of respondents say they lack access to an MPN specialist
- More than half say they lack access to education on disease progression, as only 46% felt they had enough information
- 71% say their providers never discussed clinical trial options with them, and only 10% had participated in a clinical trial

Your gift turns these insights into solutions, funding research, education, and resources like You and MPN and MPN Pathways.

Together, we can build a future where no patient is overlooked.
👉 Invest in research here: https://goto.mpnresearchfoundation.org/49SG78c

02/04/2026

Join MPN Research Foundation on Feb. 10, 2026, for a discussion about current and emerging research questions on myeloproliferative neoplasms (MPNs) raised during the 67th American Society of Hematology Conference and Exhibition held in early December in Orlando, Florida. The MPN panel will discuss the relevance and importance of a real-world evidence Registry in advancing critical MPN research.

MPN Research Foundation’s Chief Scientific Officer, David Shoultz, will moderate this discussion with perspectives from a physician, a patient, and biopharmaceutical representative, each offering unique insights on the need for ongoing research into the promise and barriers facing the MPN community.

Register now for the webinar at 12:30PM ET on Feb. 10, 2026: https://f.mtr.cool/ghnnowwmqa

02/03/2026

Stephanie’s life changed forever at 16 when she collapsed in her high school cafeteria.

Her diagnosis: essential thrombocythemia (ET), a rare blood cancer categorized as a myeloproliferative neoplasm (MPN). She learned she was “triple-negative” and discovered how little research existed. “I’m definitely an outlier,” Stephanie confessed.

In response to her daughter's diagnosis, Stephanie's mother, Celia, created Friends of ET Research and raised nearly $900,000 to push research forward.

Today, Stephanie's MPN is stable and continues championing research and patient education as a nurse practitioner and board member of MPN Research Foundation.

This , YOU can make a difference. Every donation helps fund research and support for patients worldwide.

👉 Donate here: https://goto.mpnresearchfoundation.org/49SG78c

Stand with Stephanie and Celia. Stand with the MPN community.

01/30/2026

How does the MPN PROGRESSion Registry™ work?

This observational research study follows myeloproliferative neoplasm (MPN) patients for 5-10 years. It combines electronic medical records and patient reported outcomes:

👉 Electronic medical record (EMR) data are securely accessed with permission from the patient
👉 Past data from the electronic medical record help to create a picture of the patient experience over time
👉 Patient reported outcomes (brief, optional surveys about symptoms, treatment experiences, and living with MPNs) are collected directly from patients at enrollment and then every three months

If you are a patient 18 or older, living in the U.S., who has ever been diagnosed with an MPN, join and share your MPN patient experience over time. https://f.mtr.cool/hbyfxalaeu

01/27/2026

The January edition of "Under the Microscope" will hit your inboxes at 5PM CT today!

This digest includes:

👉 Research Profile: ASH highlight

👉 Patient Profile: Maddie Flickinger

👉 Unmet Needs Survey Announcement

👉 MPN Challenge™ Announcement

and more!

Join our community today to receive these stories and so much more with this link:
https://goto.mpnresearchfoundation.org/4pIYQrn

01/26/2026

Help shape the future of myeloproliferative neoplasm (MPN) care worldwide! Participate in the 2026 Global MPN Patient Unmet Needs Assessment and share your experiences. Every patient's voice counts.

Take the assessment now: https://goto.mpnresearchfoundation.org/4bv9XAR

Together, we can make a difference.

Address

PO Box 10743
Chicago, IL
60610

Website

http://www.mpnresearchfoundation.org/

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