There is a lot to share this month! Our 2025 Impact Report is out, and a new RUNX1 Insight Drop on allergies, sinus issues, and asthma is live. Registration is also open for an upcoming MedEd webinar on Inherited Platelet Disorders in Women and the next Patient & Family Coffee Chat.
None of this moves forward without you. Thank you for being part of this community! |
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Coming in May 2027: The Virtual Scientific Conference |
Mark your calendars! The 11th Annual RUNX1 Scientific Conference will be held virtually May 5-6, 2027.
The Scientific Conference unites researchers and clinicians from around the world to share the latest discoveries and advance the science of RUNX1-FPD.
More details coming soon! |
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| Our 2025 Impact Report, "Navigating New Frontiers," is now available!
Last year, bold science, deep patient partnership, and a united community moved us meaningfully closer to our goal of preventing blood cancer in RUNX1-FPD.
Read the full report to see what we accomplished, and where we’re headed next. |
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| RUNX1 Pulse Blog: Latest Findings from the NIH RUNX1 Study |
Nearly 200 families and close to 600 participants have now enrolled in the NIH RUNX1-FPD Clinical Research Study, helping researchers answer some of the community’s most pressing questions about blood cancer risk, family testing, and long-term monitoring.
In a new RUNX1 Pulse blog, Dr. David Young shares the latest findings from the study, including updated lifetime blood cancer risk estimates, what the data now show about blood cancer risk in children, and why ongoing monitoring is important. If you or someone in your family has RUNX1-FPD, this is an important update to read. |
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| RUNX1 Patient Tissue Bank |
Led by the University of Pennsylvania and supported by RRP, the RUNX1 Patient Tissue Bank invites individuals with RUNX1-FPD and their family members to donate small amounts of blood or bone marrow during routine clinical care. This means no extra trips or out-of-pocket costs to participate.
Every sample supports approved research working to better understand RUNX1-FPD and advance blood cancer prevention. To learn more or get started, visit the RUNX1 Research Portal: |
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Our latest Insight Drop explores a pattern many in our community know firsthand: allergies, sinus issues, and asthma or reactive airway disease appearing together.
Among 57 participants, 40% reported allergies, 35% sinus issues, and 23% asthma or reactive airway disease. More than half of those who reported allergies also reported asthma or reactive airway disease.
Because RUNX1 helps regulate immune cells and is active in tissues lining the airways, there may be a biological reason these conditions cluster in RUNX1-FPD, although more research is needed. Read the full Insight Drop here: |
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Helping Reclassify RUNX1 Variants of Uncertain Significance |
A variant of uncertain significance (VUS) can leave patients and families (and their clinicians) with questions about what the result means and what comes next.
RRP is working with the ClinGen Myeloid Malignancy Variant Curation Expert Panel, the NIH RUNX1 Natural History Study, and ConnectMyVariant to help gather the evidence needed to clarify these variants over time.
If you or someone in your family has received a RUNX1 VUS result, ConnectMyVariant is a free program that can help you understand your variant, connect with others who share it, and support research that may contribute to its reclassification. Contact Dr. Katrin Ericson, RRP’s President & Executive Director, to learn more. |
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| August RUNX1-FPD Patient & Family Coffee Chat
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Our next Patient & Family Coffee Chat is Wednesday, August 12, and we’d love to see you there! Come introduce yourself, share your story, or simply listen.
Whether you are new to RRP or have known us for a while, we hope you’ll join us to offer your perspective. |
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| RRP Video Spotlight: Explore the RUNX1 Patient Data Hub
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New to the RUNX1 Patient Data Hub or looking for a refresher?
This webinar explains how the RUNX1 PDH helps advance RUNX1-FPD research, and walks you through setting up your account, completing surveys, exploring your data, and using the platform’s patient tools. |
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RRP Medical Education Webinar: “A Lifetime of Bleeding: Inherited Platelet Disorders in Women” Thursday, September 17, 2026
11:00 a.m. PDT • 2:00 p.m. EDT • 7:00 p.m. BST |
Heavy menstrual bleeding can be an early sign of an inherited platelet disorder, but the underlying cause can go unrecognized.
In this upcoming MedEd webinar, Christina Timleck, an individual with RUNX1-FPD, will share her journey from her first period through diagnosis, family planning, pregnancy, perimenopause, and hysterectomy.
Dr. Hilary Whitworth (Children’s Hospital of Philadelphia) and Dr. Robert Silver (University of Utah) will provide clinical context on recognizing, evaluating, and managing inherited platelet disorders across the female lifespan. |
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