2026 Newsletters

New Grant Opportunity from RRP and Blood Cancer UK 

RRP and Blood Cancer UK are co-funding a new Project Grant focused on the earliest origins of blood cancer in RUNX1-FPD. The grant offers up to £300,000 over three years and invites scientists to study the earliest changes in the blood, long before cancer develops, to help predict risk and intervene earlier.

Lead applicants must be based at an eligible UK institution, and international collaborations are encouraged. Applications close January 21, 2027.

If you know a researcher whose work could help, please share this information.

NEW: RUNX1 Pulse Blog: 

Will I Ever Accept My Diagnosis?

By Doug Lanter

Doug grew up knowing that an unexplained blood disorder ran through his family, but it was only after his twin sons were born that he learned it had a name: RUNX1-FPD.

In our latest RUNX1 Pulse blog, Doug shares how finding community after his diagnosis shaped his path forward and helped him see that he did not have to face uncertainty alone.

RUNX1 Insight Drop: Do You Know What Your Blood and Bone Marrow Results Showed? 

Blood counts, bone marrow biopsies, and somatic mutation testing can reveal different information about your health.

If you are unsure about some of your own results, you are far from alone. Among RUNX1 Patient Data Hub participants who reported having had a bone marrow biopsy, almost half were not sure what it showed.

A new Insight Drop looks at which tests participants have had and how confident they feel about understanding their results. It also offers suggestions for talking with your care team about what your results mean.

Thank You for Speaking Up for Research Funding

In June, we asked our community to submit public comments on a proposed U.S. government rule that would give political appointees final say over which research grants get funded. Many of you did, and several wrote your own letters, in your own words.

After overwhelming opposition from you and many others, the U.S. Congress paused the rule with support from both parties. It is paused, not withdrawn, and the pause runs through December 11, so we are keeping a close eye on what comes next.

There is nothing you need to do right now, and we will let you know if that changes. Thank you so much for speaking up. It meant a great deal to all of us.

2026 Year-End Appeal
Catalyzing Change: The Next Chapter in RUNX1

This year brought real momentum to RUNX1-FPD research, and our community's generosity helped make that progress possible. 

We invite you to help build on that momentum by making a gift of any size during our Year-End Appeal kicking off in November.

Watch your inbox for more information, and thank you for supporting RUNX1-FPD research!

November RUNX1 Patient & Family Coffee Chat
Thursday, November 5th, 2026

 9:00 a.m. PT • 12:00 p.m. ET • 5:00 p.m. GMT

The last RUNX1 Patient & Family Coffee Chat of 2026 is Thursday, November 5. Join other patients and family members for an informal conversation about whatever is on your mind. Ask a question, share an experience, or simply listen.

Whether you are new to the RRP community or have been part of it for years, we would love to have you there.

Registration Is Open: 2027 Virtual RUNX1 Patient Meeting

Registration is now open for the 2027 Virtual RUNX1 Patient Meeting on Friday, May 14, 2027.

The Patient Meeting brings together individuals with RUNX1-FPD and their families for research updates, clinical trial news, and opportunities to connect with others in our community. We’ll share the agenda and additional details closer to the event.

RUNX1-FPD Science, Made Accessible

An RRP community member created these short videos five years ago to help explain the science behind RUNX1-FPD. While slightly outdated, the fundamentals are still accurate for anyone interested in learning more about the condition and how researchers are working toward blood cancer prevention:

RUNX1 Cancer Disease Biology introduces RUNX1-FPD biology and explains how germline RUNX1 mutations can contribute to cancer development. 

RUNX1-FPD Research Guideposts looks at the clues shaping the field’s current research strategies.

Registration Is Open: 2027 Virtual RUNX1 Scientific Conference 

Registration is open for the 11th Annual Virtual RUNX1 Scientific Conference on Tuesday, May 4, and Wednesday, May 5, 2027.

The Scientific Conference brings together researchers and clinicians from around the world to share the latest discoveries and advance RUNX1-FPD research. Watch for the agenda and additional details as speakers are confirmed.

2027 RRP-ALSF Early Career Investigator Grant

The 2027 RRP-ALSF Early Career Investigator Grant offers up to $180,000 over three years to support early-career scientists pursuing basic or translational research focused on preventing the progression from premalignancy to blood cancer in individuals with RUNX1-FPD.

Applications are due Thursday, December 17, 2026, at 8:00 p.m. ET.

Review the guidelines now for eligibility requirements, priority research areas, budget information, and application instructions.

New RUNX1-FPD Clinical Reference

This new clinical reference covers when to suspect RUNX1-FPD, how to confirm a diagnosis, and guidance on bleeding management, surveillance, and pregnancy. It also points to options for case consultation.