Our annual X-Out Blood Cancer campaign begins tomorrow! This year, we’re highlighting the research your donations make possible by featuring investigators working to prevent blood cancer in RUNX1-FPD.
Throughout the campaign, we’ll share tools, fundraising ideas, and stories from community members who are helping drive this work forward.
Whether you choose to launch a peer-to-peer fundraiser or make a gift, your participation directly supports the research advancing prevention and early intervention. Thank you in advance for your support! |
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| 2026 X-Out Blood Cancer Campaign |
Our annual X-Out Blood Cancer Campaign launches this Wednesday, April 1.
Please join us by creating your own fundraiser through GiveButter and/or GoFundMe, or through DonorBox if you are outside the United States, and inviting your family and community to support research focused on preventing blood cancer.
Throughout April and May, we’ll highlight the scientists driving this work and how donor support is helping to move their research forward. Let’s reach our goal of $30,000 this year together! |
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New RUNX1 Insight Drops Are Now Available |
The RUNX1 Patient Data Hub continues to grow, capturing real-world experiences from individuals living with RUNX1-FPD. Understanding these experiences helps patients, families, and healthcare providers make informed care decisions.
This month’s RUNX1 Insight Drops focus on blood and bleeding, central features of RUNX1-FPD. We highlight participant-reported data on platelet count and function, as well as common bleeding patterns such as bruising and hematomas. |
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New RUNX1 Pulse Blog: Understanding How Inherited Gene Variants Shape Blood Cancer Risk |
Dr. Kelly Bolton and Dr. Jie Liu explain how inherited genetic variants, including RUNX1-FPD, interact with changes in blood cells over time to influence blood cancer risk. This research helps explain why some individuals with the same inherited variant develop blood cancer while others do not. It also highlights the importance of ongoing monitoring and participation in research that tracks changes over time.
Read the full blog to learn how these findings are shaping our understanding of blood cancer risk and early detection. |
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#RAREis Scholarship Application Is Now Open |
The EveryLife Foundation is now accepting applications for its #RAREis Scholarship Fund. This year, 58 scholarships of $5,000 will be awarded to individuals living with a rare disease. The scholarship is open to individuals ages 17 and older in the United States who are enrolling in college, graduate school, or a trade program for Fall 2026.
Learn more and apply by April 28 at 2 PM ET at RareScholarship.org |
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| Bleeding Disorders Awareness Month: Halie’s Story |
In recognition of Bleeding Disorders Awareness Month, we’re sharing Halie’s story about the importance of paying attention to early signs.
After losing her grandmother and then her mother to blood cancer, Halie began asking questions about her own risk, especially after noticing symptoms like easy bruising.
Although she was told it “wasn’t genetic,” she continued to push for answers, eventually connecting with a genetic counselor and receiving a RUNX1-FPD diagnosis.
Her story highlights how trusting your instincts can lead to earlier answers and a correct diagnosis, helping you make more informed decisions about your health. Watch more of Halie’s story: |
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| A much-anticipated publication from the National Institutes of Health (NIH) team studying RUNX1-FPD is now available. This new research shares early findings on blood cancer rates in children with RUNX1-FPD, along with recommendations for screening and monitoring.
We’ll be sharing more in the coming months, including a plain-language summary for our community. Dr. David Young from the NIH will also discuss the research at the 2026 RUNX1 Patient Meeting in May. |
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RRP Patient Webinar: “Can Dietary Changes Reduce Blood Cancer Risk?”
Thursday, April 2nd, 2026
9 a.m. PT • 12 p.m. ET
5 p.m. BST |
As part of the X-Out Blood Cancer Campaign kickoff, Urvi Shah, MD, blood cancer specialist at Memorial Sloan Kettering Cancer Center, will explore the connections between nutrition, inflammation, and long-term blood health.
Dr. Shah’s research focuses on how dietary patterns may influence inflammation and blood cancer risk in conditions with increased susceptibility. Her work provides valuable insight into how nutrition can support strategies to help slow progression to blood cancer. |
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2026 RUNX1 Patient Meeting Registration Ends Soon |
RUNX1-FPD patients and their families are invited to join us in Atlanta to connect with other families, hear the latest research, and participate in interactive sessions for patients and caregivers. A dedicated Kids Room is available for attendees under 18.
There is no registration fee, and RRP covers travel, lodging, and meals for patients, their children, and one close family member. Registration ends on Monday, April 6, so register today! |
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Now Accepting Applications for the 2027 RRP-ACS LEAP Grant |
RRP has partnered with the American Cancer Society (ACS) to again offer the Leukemia Exploration And Prevention (LEAP) Grant program in 2027. The program supports innovative research focused on blood cancer interception and prevention for individuals with RUNX1-FPD
Applications are due by June 1, 2026. Click here for more information: |
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RRP & ACS Announce Second 2025 LEAP Grant Recipient |
RRP and the American Cancer Society (ACS) are excited to announce the second recipient of the 2025 LEAP Grant. Project: Low-dose sirolimus as an early intervention for RUNX1-FPD
Principal Investigator: Anupriya Agarwal, PhD, Oregon Health & Science University
Team Principal: Courtney DiNardo, MD, MCSE, The University of Texas MD Anderson Cancer Center
Co-Investigators: - Curtis Lachowiez, MD, and Olivia Lucero, MD, Oregon Health & Science University
- Kelly Bolton, MD, PhD, Washington University School of Medicine in St. Louis
- Andrew Frelinger, PhD – Boston Children’s Hospital
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The team will expand a clinical trial testing whether low-dose sirolimus, an FDA-approved anti-inflammatory drug, can help prevent leukemia in high-risk RUNX1-FPD patients. The study will examine effects on blood and bone marrow function, immune signaling, inflammation, and mutation burden, providing key data for future prevention strategies. Congratulations to the team! |
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| 2026 RUNX1 Scientific Conference Keynote Speaker |
We’re pleased to announce that Torsten Haferlach, MD, PhD, will serve as a keynote speaker at the 10th Annual RUNX1 Scientific Conference. Dr. Haferlach is a pioneer in the integration of artificial intelligence and automation into clinical hematology, transforming how complex diagnostic data are generated, interpreted, and applied in patient care.
As founder of the Munich Leukemia Laboratory, he has built one of the most advanced data-driven diagnostic platforms in the field. |
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In his keynote, Dr. Haferlach will share his vision for the future of hematologic diagnostics and how AI-enabled approaches may improve precision, scalability, and patient outcomes.
Registration for the RUNX1 Scientific Conference is closing soon. Review the full agenda and secure your spot before registration ends on Monday, April 6. |
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| Stay up to date on the latest RUNX1 research with the RUNX1 Radar, our regularly updated tracker of newly published studies.
Have a RUNX1 article you’d like included? Email a link to Dr. Katrin Ericson, RRP’s Executive Director. Our list has just been refreshed with recent publications. See the full roundup below. |
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