August has been a month of turning questions into resources. In this issue, you’ll find new tools and updates designed to help individuals and families navigate life with RUNX1-FPD, from day-to-day concerns and blood cancer risk to research updates, clinical education, and opportunities to connect. |
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Registration Is Open: 2027 Virtual
RUNX1 Scientific Conference: May 4 & 5, 2027 8:30 a.m. PDT • 11:30 a.m. EDT • 4:30 p.m. BST |
Registration is now open for the 11th Annual Virtual RUNX1 Scientific Conference on Tuesday, May 4, and Wednesday, May 5, 2027, beginning at 8:30 a.m. PDT on both days.
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 more details as speakers are confirmed. |
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| Registration Is Open: 2027 Virtual
RUNX1 Patient Meeting: Friday, May 14, 2027
9:00 a.m. PDT • 12:00 p.m. EDT • 5:00 p.m. BST |
Registration is now open for the 2027 Virtual RUNX1 Patient Meeting being held 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. |
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2026 RUNX1 Research Update Wednesday, September 30, 2026
11:00 a.m. PDT • 2:00 p.m. EDT • 7:00 p.m. BST |
Join RRP Executive Director Katrin Ericson, PhD, and RRP Scientific Advisory Board Chair Nancy Speck, PhD, as they break down the key research findings and areas of progress from this year’s RUNX1 Scientific Conference and research webinars, explaining what this research could mean for individuals and families with RUNX1-FPD.
This webinar is intended for individuals with RUNX1-FPD and their family members, but all community members are welcome. No scientific background is needed, and there will be time for questions.
Is there something specific you would like Katrin and Nancy to cover? Please include your question or topic in the comment box on the Zoom registration form. |
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| RUNX1 Pulse Blog: It's Never Just Cancer |
In her latest RUNX1 Pulse blog, RRP co-founder Monica Babich reflects on the meaning behind our tagline, “One Goal. Prevent Blood Cancer,” and why that focus does not mean the rest of the RUNX1-FPD experience matters any less.
From allergies and diagnostic odysseys to the emotional weight of living with uncertainty, Monica writes about what families in our community know well: RUNX1-FPD is complex, personal, and never just about developing cancer. |
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| New Patient Resource: Preemptive Stem Cell Transplant Reflection Tool |
A preemptive stem cell transplant is one of the most complex topics for individuals with RUNX1-FPD to discuss with their care team, and it can be hard to know when or how to begin the conversation.
RRP has created a reflection tool, based on a published framework developed by RUNX1-FPD clinicians and RRP community members, to help individuals and families think through what a preemptive transplant involves, how it compares with active monitoring, and which clinical and personal factors may be important to consider. This tool is not medical advice or a recommendation for or against preemptive transplant. It is designed to help you reflect on your own priorities and prepare for a more informed conversation with your care team. |
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| New on the Website: Living with RUNX1-FPD |
What should I watch for from day to day? How do I talk with my care team?
What does my diagnosis mean for my relatives? Our new Living with RUNX1-FPD webpage brings together resources addressing the questions we most often hear from individuals and families, both after diagnosis and over time.
No matter where you are in your journey, please take a look at what is available. If you notice anything missing or have ideas for resources we should add, email Amanda Eggen at aeggen@runx1-fpd.org. |
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| Introduction to the RUNX1 Patient Tissue Bank |
Looking for a way to contribute to RUNX1-FPD research without traveling to a study site?
In this video, RUNX1 Patient Tissue Bank co-investigator Martin Carroll, MD, explains why this resource matters and how donated samples support research. The video also walks viewers through how to enroll and participate. - Donate a small sample during a routine clinical appointment
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Participate at no direct cost to you
- Have your sample securely stored, de-identified, and available only to approved researchers
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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. The ALSF application portal is not yet open; we will add the application link to our website once it becomes available. |
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“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.
Hilary Whitworth, MD, MSCE (Children’s Hospital of Philadelphia) and Robert Silver, MD (University of Utah) will provide clinical context on recognizing, evaluating, and managing inherited platelet disorders across the female lifespan. |
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The Emotional Impact of RUNX1-FPD on
Adolescents and Young Adults |
A recent paper from NIH researchers published in the Journal of Genetic Counseling explores the psychosocial experiences of adolescents and young adults with RUNX1-FPD, including the emotional impact of lifelong monitoring, uncertainty about future cancer risk, family concerns, and feeling alone. The findings highlight something many in our community know well: living with RUNX1-FPD carries an emotional weight alongside the medical one.
The authors emphasize the importance of psychological counseling, peer support, and genetic counseling as part of comprehensive care. |
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