iiinova — where your digital self keeps evolving

RUNX1 Research Program @runx1-fpd.org · 01/10/2026

The September RRP Newsletter is now available. It covers the expansion of the sirolimus clinical trial to @ohsunews.bsky.social, application guidelines for the 2027 RRP-ALSF ECI Grant, a MedEd Webinar on inherited platelet disorders in women, and more. runx1researchprogram.org/bSept2026New...

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RUNX1 Research Program @runx1-fpd.org · 28/09/2026

The RRP-sponsored Stem Cell Harvesting and Banking clinical trial at @mdanderson.bsky.social and @childrensphila.bsky.social is investigating the safety and feasibility of collecting and banking stem cells from adults with RUNX1-FPD. runx1researchprogram.org/xSCHB

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RUNX1 Research Program @runx1-fpd.org · 25/09/2026

Led by @upenn.edu and supported by RRP, the RUNX1 Patient Tissue Bank connects approved researchers with de-identified samples from RUNX1-FPD patients. Participants contribute during routine local appointments. Share with your patients: runx1researchprogram.org/xTissueBank

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RUNX1 Research Program @runx1-fpd.org · 22/09/2026

The August newsletter is here, highlighting upcoming events, a new RUNX1 research funding opportunity opening soon, and recent research from the National Institutes of Health (NIH). Read it here: runx1researchprogram.org/bAug2026News...

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RUNX1 Research Program @runx1-fpd.org · 17/09/2026

Registration is now open for the 11th Annual Virtual RUNX1 Scientific Conference on May 4 and 5, 2027. The full agenda will be shared once sessions and speakers are confirmed. Register here: runx1researchprogram.org/x2027VSCRRP

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RUNX1 Research Program @runx1-fpd.org · 15/09/2026

A pilot study at @mdanderson.bsky.social is evaluating the safety and tolerability of low-dose sirolimus in adults with RUNX1-FPD. Additional study measures include platelet counts, bleeding symptoms, somatic mutation burden, mTORC1 signaling, and more: runx1researchprogram.org/xSirolimus

Image of pills in packet, overlayed by blue gradient with the text "SIROLIMUS CLINICAL TRIAL"

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RUNX1 Research Program @runx1-fpd.org · 14/09/2026

The 2027 RRP-ALSF ECI Grant offers up to $180,000 over 3 years to support early-career scientists pursuing basic or translational research focused on preventing the progression from premalignancy to blood cancer in those with RUNX1-FPD. Guidelines now available: www.runx1-fpd.org/runx1-resear...

Graphic promoting the Early Career Investigator Grant by stating that "Guidelines now available".

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RUNX1 Research Program @runx1-fpd.org · 03/09/2026

Check out our latest newsletter: • Register for RRP's Virtual RUNX1 Scientific Conference • 2027 RRP- @alexslemonade.bsky.social ECI Grant guidelines available • NIH study on the psychosocial experiences of adolescents & young adults with RUNX1-FPD runx1researchprogram.org/bAug2026News...

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RUNX1 Research Program @runx1-fpd.org · 31/10/2025

November is #NationalMarrowDonorAwarenessMonth, honoring those who donate bone marrow or blood stem cells to save lives and raising awareness about how others can become donors. If you’re 18–40, you may be able to join the NMDP registry (formerly Be The Match): www.nmdp.org

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RUNX1 Research Program @runx1-fpd.org · 08/10/2025

Early Bird Registration Reopened for the 2026 RUNX1 Scientific Conference! Register at the discounted rate of $150 through Monday, October 21. Register now: runx1researchprogram.org/xRRPSciCon2026

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RUNX1 Research Program @runx1-fpd.org · 19/09/2025

Registration is OPEN! Join us in Atlanta, GA for the 10th Annual RUNX1 Scientific Conference Theme: Catalyzing Change: The Next Chapter in RUNX1 May 6–7, 2026 | Emory Conference Center Hotel Secure your spot today: runx1researchprogram.org/xRRPSciCon2026

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RUNX1 Research Program @runx1-fpd.org · 17/09/2025

Don’t miss our next #MedEd webinar “Hereditary Hematologic Malignancies: Not That Rare” featuring Dr. Kelly Bolton (Washington University School of Medicine). • Wednesday, October 1 • 12:30 PM PT Expert Q&A Panelists: • Dr. Sravanti Rangaraju • Kelcy Smith-Simmer, MMSc, CGC Register today:

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RUNX1 Research Program @runx1-fpd.org · 16/09/2025

We invite you to refer eligible RUNX1-FPD patients to the Stem Cell Harvesting & Banking Clinical Trial open at both Children’s Hospital of Philadelphia (CHOP) and MD Anderson Cancer Center. Register here: runx1researchprogram.org/StemCellOlso...

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RUNX1 Research Program @runx1-fpd.org · 20/08/2025

In “Understanding Genetics and RUNX1-FPD,” we break down the science of genetics and gene variants, including the difference between inherited, de novo, and acquired changes, and what they mean for RUNX1-FPD and cancer risk. Read here: www.runx1-fpd.org/runx1-pulse/...

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RUNX1 Research Program @runx1-fpd.org · 15/08/2025

Increasing participation in blood cancer trials is essential for advancing treatment, yet many patients face barriers. Dr. Gwen Nichols shares how @llsusa.bsky.social's Equity in Access Research Program works to remove them. LOIs due Sept 11, 2025: runx1researchprogram.org/bLLSEquityBlog

runx1researchprogram.org

RUNX1 Research Program

Learn how LLS’s Equity in Access Research Program addresses barriers to blood cancer clinical trials, improving access for underrepresented patients.

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RUNX1 Research Program @runx1-fpd.org · 14/08/2025

Don’t miss Session 6 on our RUNX1 Scientific Conference: RUNX1 Mutations - Impact on Gene Regulatory Networks & Variant Classification featuring: Dr. Tim Ripperger - Hannover Medical School Dr. Catarina Menezes - NHGRI Register today: runx1researchprogram.org/xRUNX1SciCon...

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RUNX1 Research Program @runx1-fpd.org · 06/08/2025

Healthcare providers: please encourage your #RUNX1 patients to connect with our supportive community by contacting Amanda Eggen at aeggen@runx1-fpd.org or through our website: www.runx1-fpd.org.

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RUNX1 Research Program @runx1-fpd.org · 06/08/2025

Gene therapy is transforming the future of medicine but, what does that mean for #inheritedblooddisorders? Read the full article: www.runx1-fpd.org/runx1-pulse/...

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RUNX1 Research Program @runx1-fpd.org · 05/08/2025

Last chance! Early Bird Registration for the 2026 10th Annual RUNX1 Scientific Conference ends TODAY, Tuesday, August 5. Date: May 6–7, 2026 Location: The Emory Conference Center Hotel, Atlanta, GA Tickets: $150 early bird rate (50% off) Register: runx1researchprogram.org/xRRPSciCon2026

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RUNX1 Research Program @runx1-fpd.org · 30/07/2025

Registration is open for the 9th Annual Virtual RUNX1 Scientific Conference happening September 9–10, 2025! Don’t miss Session 4: “Controlling Inflammation with Diet in Blood Cancer Patients” featuring Dr. Urvi Shah (MSKCancerCenter) runx1researchprogram.org/xRUNX1SciCon...

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RUNX1 Research Program @runx1-fpd.org · 30/07/2025

Registration today for the 9th Annual Virtual RUNX1 Scientific Conference, happening September 9–10, 2025! Session 3: Advances in Transplants and Cell Therapies with Dr. Cynthia Dunbar (NHLBI/@NIH). Explore the full agenda + register today: runx1researchprogram.org/xRUNX1SciCon...

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RUNX1 Research Program @runx1-fpd.org · 15/07/2025

DEADLINE: NEXT MONDAY Submit your abstract for the 9th Annual Virtual #RUNX1 Scientific Conference (Sept 9–10, 2025). Share your work with the global RUNX1-FPD research community! Details here: runx1researchprogram.org/xRUNX1SciCon...

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RUNX1 Research Program @runx1-fpd.org · 01/07/2025

June newsletter highlights: • $50K+ raised to support RUNX1-FPD clinical trial access • Tissue Bank now open at @upenn.edu & accepting #RUNX1 patient samples • 2026 Scientific Conference early bird registration open thru Aug 5 • 2025 abstract submissions now open 🔗 www.runx1-fpd.org/rrp-newsletter

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RUNX1 Research Program @runx1-fpd.org · 11/06/2025

Tomorrow is the LAST day of our X-Out Blood Cancer campaign! We’re less than $400 away from hitting our $50,000 goal, and every gift is matched dollar for dollar. Donate today on: • Givebutter: givebutter.com/rrpxout2025 • GoFundMe: www.gofundme.com/charity/runx... #XOutBloodCancer #RUNX1Research

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RUNX1 Research Program @runx1-fpd.org · 11/06/2025

Abstract submissions are now open for the 9th Annual Virtual #RUNX1 Scientific Conference, happening September 9–10, 2025. Share your latest research with the global RUNX1-FPD community. Submission guidelines: runx1researchprogram.org/xRUNX1SciCon...

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RUNX1 Research Program @runx1-fpd.org · 10/06/2025

Be part of the future of RUNX1-FPD research at the 9th Annual Virtual RUNX1 Scientific Conference! Session 1 Spotlight: Modulating Inflammation to Control Clonal Evolution Tuesday, Sept 9 | 8:45–9:45 AM PDT Full agenda & registration: www.runx1-fpd.org/runx1-scient...

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RUNX1 Research Program @runx1-fpd.org · 10/06/2025

⏳ Just a Few Days Left to X-Out Blood Cancer! ⏳ We are so close to our $50,000 but we need your help to cross the finish line. Double your impact. Change a life. Givebutter – givebutter.com/rrpxout2025 GoFundMe – www.gofundme.com/charity/runx...

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RUNX1 Research Program @runx1-fpd.org · 05/06/2025

With just 1 week to go and a generous donor matching every gift, we’re only $387 shy of our $50,000 goal to support RUNX1 patients! Donate today on: • Givebutter: lnkd.in/gF8M-4R5 • GoFundMe: lnkd.in/gYds8hNs

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RUNX1 Research Program @runx1-fpd.org · 03/06/2025

The NIH has published the first dedicated study on pregnancy and delivery outcomes in individuals with RUNX1-FPD. Key findings: • Bleeding risks can be managed with proper care • Early diagnosis matters Read the full study: www.runx1-fpd.org/runx1-patien...

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RUNX1 Research Program @runx1-fpd.org · 01/06/2025

🎗️ Today is National Cancer Survivors Day 🎗️ Today we honor the strength, resilience, and hope of everyone affected by cancer: those newly diagnosed, those in treatment, those in remission, and the families, caregivers, and loved ones supporting them.

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RUNX1 Research Program @runx1-fpd.org · 31/05/2025

Now accepting abstract submissions for the 9th Annual Virtual #RUNX1 Scientific Conference on September 9th and 10th, 2025. Share your work with the international RUNX1-FPD community! Find details and guidelines here: runx1researchprogram.org/bsRUNX1SciCo...

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RUNX1 Research Program @runx1-fpd.org · 29/05/2025

📣 We’re Extending the Campaign to June 12! 📣 Thanks to your incredible support, we’re so close to reaching our $50,000 goal! Plus, every dollar you donate through June 12th will be matched! Donate on: • Givebutter: givebutter.com/rrpxout2025 • GoFundMe: www.gofundme.com/charity/runx...

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RUNX1 Research Program @runx1-fpd.org · 23/05/2025

ATTN #RUNX1 Clinicians: RRP offers specialized resources, peer groups, educational events & research opportunities specifically for RUNX1-FPD patients. Please refer your patients directly to Amanda Eggen (aeggen@runx1-fpd.org) & share our site: runx1-fpd.org.

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RUNX1 Research Program @runx1-fpd.org · 21/05/2025

Meet Jill & Arlo, a mother and son living with RUNX1-FPD. Jill has already raised $12,000 to help families like hers access clinical trials. It’s not too late for you to help too! Givebutter: givebutter.com/rrpxout2025 GoFundMe: www.gofundme.com/charity/runx... #XOutBloodCancer #RUNX1FPD

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RUNX1 Research Program @runx1-fpd.org · 12/05/2025

🚨 DOUBLE YOUR DONATION IMPACT THROUGH MAY 31 🚨 This May, every donation to our X-Out Blood Cancer Campaign is matched dollar for dollar, helping us reach our $50,000 goal twice as fast. Donate on: www.gofundme.com/charity/runx... OR givebutter.com/rrpxout2025

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RUNX1 Research Program @runx1-fpd.org · 06/05/2025

RRP Webinar in 1 Hour! Save your spot: runx1researchprogram.org/tRRPZonMay2025

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RUNX1 Research Program @runx1-fpd.org · 05/05/2025

RRP Webinar Tomorrow! Can stem cell diversity be enhanced pharmacologically? Join Dr. @leonard_zon on Tuesday, May 6th at 11 a.m. PDT for a deep dive into #RUNX1, ELF1, and a new mechanism for HSC expansion. Register today: runx1researchprogram.org/tRRPZonMay2025

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RUNX1 Research Program @runx1-fpd.org · 05/05/2025

🚨 The Fight Is On: Help Us X-Out Blood Cancer! 🚨 This May, we’re aiming to raise $50,000 to support RUNX1-FPD patients who qualify for clinical trials but need help covering travel-related costs to participate. GoFundMe: www.gofundme.com/charity/runx... Givebutter: givebutter.com/rrpxout2025

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RUNX1 Research Program @runx1-fpd.org · 30/04/2025

RRP Webinar in One Week! Can we pharmacologically expand stem cell clones in vivo? Dr. @leonard_zon presents new evidence on #RUNX1, ELF1, and Ro5-3335 in our next RRP Research Webinar on Tuesday, May 6th at 11 a.m. PDT. Register now: runx1researchprogram.org/tRRPZonMay2025

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RUNX1 Research Program @runx1-fpd.org · 30/04/2025

The latest RRP newsletter is live: • Support the X-Out Blood Cancer Campaign • Register for Dr. Leonard Zon's May 6 webinar • Early Sirolimus Pilot Study findings • 2025 Scientific Conference registration now open Read more here: www.runx1-fpd.org/rrp-newsletter

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RUNX1 Research Program @runx1-fpd.org · 16/04/2025

What if we could enhance stem cell diversity with a drug? Dr. Leonard Zon shares new insights into hematopoietic stem cell expansion and the role of #RUNX1 in our upcoming RRP webinar on Tuesday, May 6 at 11 a.m. PDT. Register now: runx1researchprogram.org/tRRPZonMay2025

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RUNX1 Research Program @runx1-fpd.org · 08/04/2025

RUNX1 researchers and RRP team continue to have a great time advancing their @chanzuckerberg.bsky.social-funded 'Patient-Partnered Collaboration' project together.

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RUNX1 Research Program @runx1-fpd.org · 08/04/2025

Join us on Tuesday, May 6 at 11 a.m. PDT to learn how #RUNX1 binding partners shape hematopoietic stem cell fate. Dr. Leonard Zon will share his team’s latest findings on ELF1, Ro5-3335, and increasing clonal diversity. Register here: runx1researchprogram.org/tRRPZonMay2025

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RUNX1 Research Program @runx1-fpd.org · 02/04/2025

Join Dr Kelly Bolton (@uwdeptmedicine.bsky.social) for a webinar on how #genetictesting is transforming the landscape of hereditary hematologic malignancies (HHMs). Joined by experts Dr Gina Keiffer & Dr Abhishek Mangaonkar (@mayocliniccancer.bsky.social): runx1researchprogram.org/bRRPHHMApril...

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RUNX1 Research Program @runx1-fpd.org · 01/04/2025

🚨 One Month to Go! 🚨 The 2025 X-Out Blood Cancer Campaign launches May 1! Help us raise $50K for RUNX1-FPD patients in clinical trials by: • Marking your calendar • Planing your fundraiser • Spreading the word #XOutBloodCancer #FightCancer

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RUNX1 Research Program @runx1-fpd.org · 19/03/2025

Join Dr. Kelly Bolton (@WashUOncology) for an insightful session exploring how genetic testing is reshaping the diagnosis, management, and treatment of hereditary hematologic malignancies (HHMs). Register now: runx1researchprogram.org/RRPWebinarAp... #BloodCancer #GCchat

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RUNX1 Research Program @runx1-fpd.org · 17/03/2025

February Recap + What’s Ahead in March! • Updates to two current clinical trials • The new RUNX1 Pulse blog: The potential role of sirolimus in aging & RUNX1-FPD • Upcoming Webinars: Two new research webinars and one new #meded webinar - register today! Read More: www.runx1-fpd.org/rrp-newsletter

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RUNX1 Research Program @runx1-fpd.org · 14/03/2025

New RUNX1 Pulse Blog Alert! RRP’s Executive Director Dr. Katrin Ericson shares how research findings around sirolimus (aka rapamycin) suggests it plays a role in longevity and immune function. Learn More: www.runx1-fpd.org/runx1-pulse/...

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RUNX1 Research Program @runx1-fpd.org · 13/03/2025

Join Dr. Kelly Bolton for a #MedEd webinar exploring genetic testing in HHMs, its role in treatment, and stem cell donor selection. She'll be joined afterward for a Q&A with expert panelists Dr. Gina Keiffer & Dr. Abhishek Mangaonkar. Register now: runx1researchprogram.org/RRPWebinarAp...

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