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runx1-fpd.org
RUNX1 Research Program
@runx1-fpd.org
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We are the only foundation in the world dedicated to supporting individuals with a rare blood disorder called RUNX1 Familial Platelet Disorder (RUNX1-FPD). We fund research and provide resources to improve the lives of those affected by this condition.
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runx1-fpd.org
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
September 17, 2026 at 12:56 PM
runx1-fpd.org
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"
September 15, 2026 at 1:25 PM
runx1-fpd.org
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".
September 14, 2026 at 11:19 AM
runx1-fpd.org
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...
September 3, 2026 at 10:47 PM
runx1-fpd.org
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
October 31, 2025 at 8:24 PM
runx1-fpd.org
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
October 8, 2025 at 5:43 PM
runx1-fpd.org
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
September 19, 2025 at 8:21 PM
runx1-fpd.org
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:
September 17, 2025 at 9:19 PM
runx1-fpd.org
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...
September 16, 2025 at 10:38 PM
runx1-fpd.org
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/...
August 20, 2025 at 7:42 PM
runx1-fpd.org
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
RUNX1 Research Program
Learn how LLS’s Equity in Access Research Program addresses barriers to blood cancer clinical trials, improving access for underrepresented patients.
runx1researchprogram.org
August 15, 2025 at 1:53 AM
runx1-fpd.org
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...
August 14, 2025 at 5:31 PM
runx1-fpd.org
Healthcare providers: please encourage your #RUNX1 patients to connect with our supportive community by contacting Amanda Eggen at [email protected] or through our website: www.runx1-fpd.org.
August 6, 2025 at 10:11 PM
runx1-fpd.org
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/...
August 6, 2025 at 10:08 PM
runx1-fpd.org
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
August 5, 2025 at 10:04 PM
runx1-fpd.org
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...
July 30, 2025 at 5:43 PM
runx1-fpd.org
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...
July 30, 2025 at 5:40 PM
runx1-fpd.org
Grateful for this important new study from @kellybolton.bsky.social & colleagues in Nature Genetics showing how germline variation, including in RUNX1, can shape CH and influence blood cancer risk. Research like this helps deepen our understanding of #RUNX1FPD.
doi.org/10.1038/s415...
Germline genetic variation impacts clonal hematopoiesis landscape and progression to malignancy - Nature Genetics
The relationship between pathogenic germline variation, clonal hematopoiesis (CH) and risk of hematologic malignancy is explored in 731,835 individuals across 6 cohorts. Carriers of variants in certai...
doi.org
July 18, 2025 at 6:36 PM
runx1-fpd.org
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...
July 15, 2025 at 9:29 PM
runx1-fpd.org
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
July 1, 2025 at 1:42 AM
runx1-fpd.org
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
June 11, 2025 at 6:22 PM
runx1-fpd.org
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...
June 11, 2025 at 6:03 PM
runx1-fpd.org
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...
June 10, 2025 at 4:08 PM
runx1-fpd.org
⏳ 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...
June 10, 2025 at 3:56 PM
runx1-fpd.org
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
June 5, 2025 at 9:17 PM