RUNX1 Research Program
@runx1-fpd.org
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.
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
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
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
If you’re 18–40, you may be able to join the NMDP registry (formerly Be The Match): www.nmdp.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
Register at the discounted rate of $150 through Monday, October 21.
Register now: runx1researchprogram.org/xRRPSciCon2026
October 8, 2025 at 5:43 PM
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
Register at the discounted rate of $150 through Monday, October 21.
Register now: runx1researchprogram.org/xRRPSciCon2026
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
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
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
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
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:
• 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
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:
• Wednesday, October 1
• 12:30 PM PT
Expert Q&A Panelists:
• Dr. Sravanti Rangaraju
• Kelcy Smith-Simmer, MMSc, CGC
Register today:
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...
Register here: runx1researchprogram.org/StemCellOlso...
September 16, 2025 at 10:38 PM
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...
Register here: runx1researchprogram.org/StemCellOlso...
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/...
Read here: www.runx1-fpd.org/runx1-pulse/...
August 20, 2025 at 7:42 PM
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/...
Read here: www.runx1-fpd.org/runx1-pulse/...
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
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
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
LOIs due Sept 11, 2025: runx1researchprogram.org/bLLSEquityBlog
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...
Dr. Tim Ripperger - Hannover Medical School
Dr. Catarina Menezes - NHGRI
Register today:
runx1researchprogram.org/xRUNX1SciCon...
August 14, 2025 at 5:31 PM
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...
Dr. Tim Ripperger - Hannover Medical School
Dr. Catarina Menezes - NHGRI
Register today:
runx1researchprogram.org/xRUNX1SciCon...
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.
August 6, 2025 at 10:11 PM
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.
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/...
Read the full article: www.runx1-fpd.org/runx1-pulse/...
August 6, 2025 at 10:08 PM
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/...
Read the full article: www.runx1-fpd.org/runx1-pulse/...
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
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
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
Date: May 6–7, 2026
Location: The Emory Conference Center Hotel, Atlanta, GA
Tickets: $150 early bird rate (50% off)
Register: runx1researchprogram.org/xRRPSciCon2026
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...
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
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...
Don’t miss Session 4: “Controlling Inflammation with Diet in Blood Cancer Patients” featuring Dr. Urvi Shah (MSKCancerCenter)
runx1researchprogram.org/xRUNX1SciCon...
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...
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
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...
Session 3: Advances in Transplants and Cell Therapies with Dr. Cynthia Dunbar (NHLBI/@NIH).
Explore the full agenda + register today:
runx1researchprogram.org/xRUNX1SciCon...
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...
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
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...
doi.org/10.1038/s415...
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...
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
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...
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...
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
• $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
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
• $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
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
Donate today on:
• Givebutter: givebutter.com/rrpxout2025
• GoFundMe: www.gofundme.com/charity/runx...
#XOutBloodCancer #RUNX1Research
June 11, 2025 at 6:22 PM
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
Donate today on:
• Givebutter: givebutter.com/rrpxout2025
• GoFundMe: www.gofundme.com/charity/runx...
#XOutBloodCancer #RUNX1Research
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...
Share your latest research with the global RUNX1-FPD community.
Submission guidelines: runx1researchprogram.org/xRUNX1SciCon...
June 11, 2025 at 6:03 PM
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...
Share your latest research with the global RUNX1-FPD community.
Submission guidelines: runx1researchprogram.org/xRUNX1SciCon...
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...
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
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...
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...
⏳ 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...
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
⏳ 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...
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...
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
Donate today on:
• Givebutter: lnkd.in/gF8M-4R5
• GoFundMe: lnkd.in/gYds8hNs
June 5, 2025 at 9:17 PM
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
Donate today on:
• Givebutter: lnkd.in/gF8M-4R5
• GoFundMe: lnkd.in/gYds8hNs
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...
Key findings:
• Bleeding risks can be managed with proper care
• Early diagnosis matters
Read the full study: www.runx1-fpd.org/runx1-patien...
June 3, 2025 at 12:38 AM
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...
Key findings:
• Bleeding risks can be managed with proper care
• Early diagnosis matters
Read the full study: www.runx1-fpd.org/runx1-patien...
🎗️ 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.
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.
June 1, 2025 at 3:10 PM
🎗️ 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.
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.
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...
runx1researchprogram.org/bsRUNX1SciCo...
May 31, 2025 at 2:05 AM
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...
runx1researchprogram.org/bsRUNX1SciCo...
📣 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...
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...
May 29, 2025 at 5:56 PM
📣 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...
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...