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.

02/24/2026

Did you know? 95% of rare diseases lack FDA-approved treatments.

Clinical trials are the bridge from bench to bedside, but most patients never hear about them.

Our 2024 Patient & Caregiver Unmet Needs Assessment revealed:
✔ Only 10% of patient respondents reported participating in a trial
✔ 71% said their provider never discussed trial options

Your gift helps connect myeloproliferative neoplasm (MPN) patients to life-changing clinical trials through spreading knowledge to community hematologists and oncologists. We have also partnered with Blood Cancer United to give a more personalized approach to finding the right clinical trial for a patient.

This , stand for equity and access.
👉 Donate: https://f.mtr.cool/pcnkqtoxtu
👉 Explore trials: https://f.mtr.cool/abdbymqrzr

02/23/2026

Curious about what “informed consent” really means?

Join us for the next MPN Pathways: Empowered Voices in Research webinar, featuring Emily Largent, JD, PhD, RN, who will break down how informed consent works, why it matters, and how your lived experience as a patient or caregiver can strengthen the consent process.

Date: Thursday, March 19, 2026
4pm - 5pm CT via Zoom

Register now: https://f.mtr.cool/osjkczusfq

You’ll learn:
-Core principles of informed consent
-Strategies for clear communication during the consent process
-How patients and caregivers can contribute meaningful feedback to improve consent forms and participant understanding

This webinar also counts toward completing the MPN Research Foundation Research Advocate Certification.

Can’t make it live? All registrants receive recording and post-session materials

02/20/2026

Heart problems can sometimes be the first warning sign of an undiagnosed blood cancer.

John’s story is a powerful reminder:

At 48, he suffered a severe heart attack with no clear cause. For 2 years, he believed stress was to blame—until rising platelets revealed the truth: a rare blood disease called essential thrombocythemia (ET).

This American Heart Month, you can help shorten the time it takes for patients to get answers. Your donation fuels research that can help ensure patients get the care they need sooner.

👉 Donate today and make a difference: https://f.mtr.cool/ckblvbqgnz

02/19/2026

Are you eligible to enroll in the MPN PROGRESSion Registry™? View and save this information on the primary criteria for participation.

There is power in numbers, and we need every myeloproliferative neoplasm (MPN) patient who is eligible to join. The more information gathered by the Registry for researchers, the more comprehensive, diverse, and statistically significant the data will be — and the more we can learn.

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

Address

PO Box 10743
Chicago, IL
60610

Website

http://www.mpnresearchfoundation.org/

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