@mpnrf.bsky.social
MPN PROGRESSion Registry™ is OPEN for enrollment! Join the patient-focused research initiative and share your health journey over time. We’re stronger together — individual drops of data can make an ocean of change for MPN research. https://goto.mpnresearchfoundation.org/3VSmaqq
November 5, 2025 at 4:51 PM
MPN PROGRESSion Registry™ is OPEN for enrollment! Join the patient-focused research initiative and share your health journey over time. We’re stronger together — individual drops of data can make an ocean of change for MPN research. https://goto.mpnresearchfoundation.org/3VSmaqq
How does informed consent work for the MPN PROGRESSion Registry™? We provide complete, transparent information on the research risks, benefits, and details, so you can decide what's right for you. Watch the video & enroll today! https://goto.mpnresearchfoundation.org/4hA6OAE
October 30, 2025 at 5:31 PM
How does informed consent work for the MPN PROGRESSion Registry™? We provide complete, transparent information on the research risks, benefits, and details, so you can decide what's right for you. Watch the video & enroll today! https://goto.mpnresearchfoundation.org/4hA6OAE
Ever wondered how clinical trials are designed or how YOU can help shape them?
Join our free webinar: Clinical Trial Protocol 101
🗓 Nov 20 | 🕔 5–6pm CT
🎙 Jane Perlmutter, Ph.D., MBA
✅ Register now: https://goto.mpnresearchfoundation.org/48KyxMQ
#MPNPathways #ClinicalTrials
Join our free webinar: Clinical Trial Protocol 101
🗓 Nov 20 | 🕔 5–6pm CT
🎙 Jane Perlmutter, Ph.D., MBA
✅ Register now: https://goto.mpnresearchfoundation.org/48KyxMQ
#MPNPathways #ClinicalTrials
October 28, 2025 at 3:03 PM
Ever wondered how clinical trials are designed or how YOU can help shape them?
Join our free webinar: Clinical Trial Protocol 101
🗓 Nov 20 | 🕔 5–6pm CT
🎙 Jane Perlmutter, Ph.D., MBA
✅ Register now: https://goto.mpnresearchfoundation.org/48KyxMQ
#MPNPathways #ClinicalTrials
Join our free webinar: Clinical Trial Protocol 101
🗓 Nov 20 | 🕔 5–6pm CT
🎙 Jane Perlmutter, Ph.D., MBA
✅ Register now: https://goto.mpnresearchfoundation.org/48KyxMQ
#MPNPathways #ClinicalTrials
MPN PROGRESSion Registry™ is OPEN!
18 or older? Live in the US? Ever been diagnosed with an MPN? Enroll in our new patient-focused study, that collects patient health data over time to expand our understanding of MPNs. Learn more and enroll today! https://goto.mpnresearchfoundation.org/3VSmaqq
18 or older? Live in the US? Ever been diagnosed with an MPN? Enroll in our new patient-focused study, that collects patient health data over time to expand our understanding of MPNs. Learn more and enroll today! https://goto.mpnresearchfoundation.org/3VSmaqq
October 27, 2025 at 6:06 PM
MPN PROGRESSion Registry™ is OPEN!
18 or older? Live in the US? Ever been diagnosed with an MPN? Enroll in our new patient-focused study, that collects patient health data over time to expand our understanding of MPNs. Learn more and enroll today! https://goto.mpnresearchfoundation.org/3VSmaqq
18 or older? Live in the US? Ever been diagnosed with an MPN? Enroll in our new patient-focused study, that collects patient health data over time to expand our understanding of MPNs. Learn more and enroll today! https://goto.mpnresearchfoundation.org/3VSmaqq
MPN PROGRESSion Registry™ is almost here! Can it be trusted with your data? YES! The Registry has rigorous oversight. All data is highly secure, HIPAA compliant, meets @NIH standards for privacy & confidentiality, and no identifying information will ever be shared for research.
October 7, 2025 at 10:28 PM
MPN PROGRESSion Registry™ is almost here! Can it be trusted with your data? YES! The Registry has rigorous oversight. All data is highly secure, HIPAA compliant, meets @NIH standards for privacy & confidentiality, and no identifying information will ever be shared for research.
Can registries change research? Enroll-HD helped uncover new genetic modifiers in #HuntingtonsDisease. “If you have the numbers and you have the samples, you can do great things.”—Dr. Simon Noble, @CHDIFoundation
MPNs are next. MPN PROGRESSion Registry™ launches soon!
MPNs are next. MPN PROGRESSion Registry™ launches soon!
October 5, 2025 at 8:57 PM
Can registries change research? Enroll-HD helped uncover new genetic modifiers in #HuntingtonsDisease. “If you have the numbers and you have the samples, you can do great things.”—Dr. Simon Noble, @CHDIFoundation
MPNs are next. MPN PROGRESSion Registry™ launches soon!
MPNs are next. MPN PROGRESSion Registry™ launches soon!
We raised over $100,000 this #BloodCancerAwareness Month to research #MPNs — rare, misunderstood, and under-funded cancers that start in the bone marrow.
If you donated, see if your employer will double it: https://mpnresearchfoundation.org/employer-match-double-your-donation/
If you donated, see if your employer will double it: https://mpnresearchfoundation.org/employer-match-double-your-donation/
October 3, 2025 at 10:11 PM
We raised over $100,000 this #BloodCancerAwareness Month to research #MPNs — rare, misunderstood, and under-funded cancers that start in the bone marrow.
If you donated, see if your employer will double it: https://mpnresearchfoundation.org/employer-match-double-your-donation/
If you donated, see if your employer will double it: https://mpnresearchfoundation.org/employer-match-double-your-donation/
It’s almost here!
By safely & securely collecting health data from U.S. patients living with MPNs, we’re helping researchers build knowledge, unlock better treatments and, one day, find cures. MPN PROGRESSion Registry™ launches soon. Watch for updates & opening announcements.
By safely & securely collecting health data from U.S. patients living with MPNs, we’re helping researchers build knowledge, unlock better treatments and, one day, find cures. MPN PROGRESSion Registry™ launches soon. Watch for updates & opening announcements.
October 1, 2025 at 7:02 PM
It’s almost here!
By safely & securely collecting health data from U.S. patients living with MPNs, we’re helping researchers build knowledge, unlock better treatments and, one day, find cures. MPN PROGRESSion Registry™ launches soon. Watch for updates & opening announcements.
By safely & securely collecting health data from U.S. patients living with MPNs, we’re helping researchers build knowledge, unlock better treatments and, one day, find cures. MPN PROGRESSion Registry™ launches soon. Watch for updates & opening announcements.
As #BloodCancerAwareness Month comes to a close, we want to say thank you. Thank you for standing up for #MPN patients, when others don’t. https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
September 30, 2025 at 4:02 PM
As #BloodCancerAwareness Month comes to a close, we want to say thank you. Thank you for standing up for #MPN patients, when others don’t. https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
Did you know? It can cost a billion dollars and take up to 15 years to research and develop just ONE life-saving cancer drug.
Join us before #BloodCancerAwarenessMonth ends https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
Join us before #BloodCancerAwarenessMonth ends https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
September 29, 2025 at 5:03 PM
Did you know? It can cost a billion dollars and take up to 15 years to research and develop just ONE life-saving cancer drug.
Join us before #BloodCancerAwarenessMonth ends https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
Join us before #BloodCancerAwarenessMonth ends https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
What if AI could spot the earliest signs of disease progression long before symptoms change? For patients with #MPNs, this kind of insight would be priceless.
This #BloodCancerAwareness Month, will you help fund the research? https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
This #BloodCancerAwareness Month, will you help fund the research? https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
September 22, 2025 at 1:52 PM
What if AI could spot the earliest signs of disease progression long before symptoms change? For patients with #MPNs, this kind of insight would be priceless.
This #BloodCancerAwareness Month, will you help fund the research? https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
This #BloodCancerAwareness Month, will you help fund the research? https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
For researchers like Dr. @KralovicsRober4, the question that keeps him up at night isn’t how to cure cancer. It’s how to fund the research.
“MPN was so off the radar,” he explains. “I always had to explain why it matters.”
#BloodCancerAwareness #MPNAwareness
“MPN was so off the radar,” he explains. “I always had to explain why it matters.”
#BloodCancerAwareness #MPNAwareness
September 17, 2025 at 2:04 PM
For researchers like Dr. @KralovicsRober4, the question that keeps him up at night isn’t how to cure cancer. It’s how to fund the research.
“MPN was so off the radar,” he explains. “I always had to explain why it matters.”
#BloodCancerAwareness #MPNAwareness
“MPN was so off the radar,” he explains. “I always had to explain why it matters.”
#BloodCancerAwareness #MPNAwareness
Today on #MPNAwarenessDay we honor the power of partnership. Together we’re building brighter futures for MPN patients.
Fuel discovery. Donate today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
#BloodCancerAwareness #MPNResearch
Fuel discovery. Donate today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
#BloodCancerAwareness #MPNResearch
September 11, 2025 at 10:46 PM
Today on #MPNAwarenessDay we honor the power of partnership. Together we’re building brighter futures for MPN patients.
Fuel discovery. Donate today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
#BloodCancerAwareness #MPNResearch
Fuel discovery. Donate today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
#BloodCancerAwareness #MPNResearch
“[My father] thought he had an autoimmune disorder, we didn’t know he had PV, or that it was a blood cancer, until it was too late.” — Sarah from California. This #BloodCancerAwareness Month, don’t delay, fund research today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
September 10, 2025 at 2:02 PM
“[My father] thought he had an autoimmune disorder, we didn’t know he had PV, or that it was a blood cancer, until it was too late.” — Sarah from California. This #BloodCancerAwareness Month, don’t delay, fund research today: https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
Nearly 4 in 5 #MPN patients say that slowing progression is their biggest concern. We hear you — and we’re funding research to find answers. Please, join us and make an investment in #MPNresearch today. https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
September 7, 2025 at 12:02 PM
Nearly 4 in 5 #MPN patients say that slowing progression is their biggest concern. We hear you — and we’re funding research to find answers. Please, join us and make an investment in #MPNresearch today. https://mpnresearchfoundation.org/blood-cancer-awareness-month-campaign/
#MPNs affect 300,000+ in the U.S. — yet still fly under the radar. This #BloodCancerAwarenessMonth, help bridge the gap.
💬 Reply with your MPN type
🔁 RT to raise awareness
📖 Share your journey
Every voice helps change the story. #MPNs #BCAM2025
💬 Reply with your MPN type
🔁 RT to raise awareness
📖 Share your journey
Every voice helps change the story. #MPNs #BCAM2025
September 2, 2025 at 11:02 PM
#MPNs affect 300,000+ in the U.S. — yet still fly under the radar. This #BloodCancerAwarenessMonth, help bridge the gap.
💬 Reply with your MPN type
🔁 RT to raise awareness
📖 Share your journey
Every voice helps change the story. #MPNs #BCAM2025
💬 Reply with your MPN type
🔁 RT to raise awareness
📖 Share your journey
Every voice helps change the story. #MPNs #BCAM2025
How is a patient registry different from a treatment trial? A treatment trial tests new therapies in your care to see if they are safe and effective. A registry is an observational study, collecting information about health over time helping researchers understand larger trends.
August 19, 2025 at 6:02 PM
How is a patient registry different from a treatment trial? A treatment trial tests new therapies in your care to see if they are safe and effective. A registry is an observational study, collecting information about health over time helping researchers understand larger trends.
MPN researcher and PV patient Tyler Parsons, PhD, applies his unique, dual perspective to the forthcoming MPN PROGRESSion Registry. Tyler's dual role on the Steering Committee and Patient Engagement Advisory Council (PEAC), ensures the patient voice remains central to research.
August 18, 2025 at 5:31 PM
MPN researcher and PV patient Tyler Parsons, PhD, applies his unique, dual perspective to the forthcoming MPN PROGRESSion Registry. Tyler's dual role on the Steering Committee and Patient Engagement Advisory Council (PEAC), ensures the patient voice remains central to research.
Cancer researchers are mobilizing the immune system against the CALR mutation in MPNs.
💉 Testing peptide vaccines
🧬 Engineering mutant CALR-specific CAR T cells
🧪 Developing bispecific antibodies
#CALRmutation #MPNresearch #Immunotherapy #RareCancer #CancerImmunology
💉 Testing peptide vaccines
🧬 Engineering mutant CALR-specific CAR T cells
🧪 Developing bispecific antibodies
#CALRmutation #MPNresearch #Immunotherapy #RareCancer #CancerImmunology
August 15, 2025 at 1:31 PM
Cancer researchers are mobilizing the immune system against the CALR mutation in MPNs.
💉 Testing peptide vaccines
🧬 Engineering mutant CALR-specific CAR T cells
🧪 Developing bispecific antibodies
#CALRmutation #MPNresearch #Immunotherapy #RareCancer #CancerImmunology
💉 Testing peptide vaccines
🧬 Engineering mutant CALR-specific CAR T cells
🧪 Developing bispecific antibodies
#CALRmutation #MPNresearch #Immunotherapy #RareCancer #CancerImmunology
Proud to support this Blood cover study, funded in part by @MPN_RF, uncovering CD24 as a target to restore neutrophil clearance & prevent myelofibrosis.
#MPNResearch #BloodCancer
#MPNResearch #BloodCancer
August 14, 2025 at 2:03 PM
Proud to support this Blood cover study, funded in part by @MPN_RF, uncovering CD24 as a target to restore neutrophil clearance & prevent myelofibrosis.
#MPNResearch #BloodCancer
#MPNResearch #BloodCancer
Don’t miss our upcoming webinar! MPN Pathways: Empowered Voices in Research - Session 5: Patient & Caregiver Voices in Research
🗓 Thursday, August 14 | 5–6 PM CST
🔗 Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA
#MPN #PatientAdvocacy #MPNVoices
🗓 Thursday, August 14 | 5–6 PM CST
🔗 Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA
#MPN #PatientAdvocacy #MPNVoices
August 13, 2025 at 5:01 PM
Don’t miss our upcoming webinar! MPN Pathways: Empowered Voices in Research - Session 5: Patient & Caregiver Voices in Research
🗓 Thursday, August 14 | 5–6 PM CST
🔗 Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA
#MPN #PatientAdvocacy #MPNVoices
🗓 Thursday, August 14 | 5–6 PM CST
🔗 Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA
#MPN #PatientAdvocacy #MPNVoices
August is Make a Will Month — the perfect time to protect what matters most and plan for the future. This year, consider including MPN Research Foundation in your will, trust, or estate plan.
Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit
Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit
August 6, 2025 at 5:31 PM
August is Make a Will Month — the perfect time to protect what matters most and plan for the future. This year, consider including MPN Research Foundation in your will, trust, or estate plan.
Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit
Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit
The August edition of ‘“Under the Microscope’” hit your inboxes at 5PM CT today!
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
August 5, 2025 at 10:30 PM
The August edition of ‘“Under the Microscope’” hit your inboxes at 5PM CT today!
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
Thousands of employers match charitable donations made by their employees, but most people never take advantage of it. It only takes a minute to see if your employer matches - check today:
https://mpnresearchfoundation.org/donate-to-mpn-research/
#EmployerMatch #DoubleYourDonation #MPNResearch
https://mpnresearchfoundation.org/donate-to-mpn-research/
#EmployerMatch #DoubleYourDonation #MPNResearch
July 31, 2025 at 2:03 PM
Thousands of employers match charitable donations made by their employees, but most people never take advantage of it. It only takes a minute to see if your employer matches - check today:
https://mpnresearchfoundation.org/donate-to-mpn-research/
#EmployerMatch #DoubleYourDonation #MPNResearch
https://mpnresearchfoundation.org/donate-to-mpn-research/
#EmployerMatch #DoubleYourDonation #MPNResearch
🧬 Essential thrombocythemia (ET) isn’t one-size-fits-all.
Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.
Know your mutation, know your path.
#MPNAwareness #GeneticTesting #ET
Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.
Know your mutation, know your path.
#MPNAwareness #GeneticTesting #ET
July 18, 2025 at 2:02 PM
🧬 Essential thrombocythemia (ET) isn’t one-size-fits-all.
Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.
Know your mutation, know your path.
#MPNAwareness #GeneticTesting #ET
Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.
Know your mutation, know your path.
#MPNAwareness #GeneticTesting #ET