#mpnsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 week ago

Young & Rare 2026 was a great success.

Young patients, families and experts from different countries came together to discuss the realities of children and young adults living with #MPN.

📺 YouTube: GlobalMPNScientificFoundation

🌐 https://www.gmpnsf.org

#MPNsm #RareDiseaseDay

MPN Journal

@mpnjournal.bsky.social

2 weeks ago

👀 𝗛𝗮𝘃𝗲 𝘆𝗼𝘂 𝗻𝗼𝘁𝗶𝗰𝗲𝗱 𝘆𝗲𝘁?
Notes can now be created directly from your dashboard — now with multiple note types.

📝 Written
🎙️ Record consultations & listen back later
📎 Files & images

Edit anytime. Filter by period.
Better preparation for doctor appointments. 💙
#MPNsm #digitalhealth #hematology

MPN Journal

@mpnjournal.bsky.social

1 month ago

📊 𝗦𝘆𝗺𝗽𝘁𝗼𝗺 𝗕𝘂𝗿𝗱𝗲𝗻
A 0–100 score that shows:
• How heavy your physical symptoms are
• How lifestyle impacts them
• What truly makes a difference over time

We’re seeing very positive feedback on the impact of this graph — making the connection clear and actionable.
#healthtech #hematology #MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

🇺🇸 USA Webinar by @GMPNSF with OHSU.

🎤 Dr. Joseph Shatzel + 💬 Angela Valentine (MPN patient voice).

Topic: Essential Thrombocythemia & daily life with MPNs.

📅 Feb 17, 2026 | 9AM PST / 12PM EST / 6PM CET | Zoom.

🌍 Join us: us06web.zoom.us/webinar/register/WN_aBf_...

 #MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

🇺🇸 USA webinar by @GMPNSF with OHSU.
🎤 Dr. Joseph Shatzel
💬 Angela Valentine, MPN patient voice.

Topic: Essential Thrombocythemia (ET) and everyday life with MPNs.

📅 Feb 17, 2026
🕘 9AM PST | 12PM EST | 6PM CET
📍 Zoom

👉 Register: https://www.gmpnsf.org/post/what-are-micronutrients

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

USA Webinar: Talking with Dr. Joseph Shatzel about MPNs and Essential Thrombocythemia (ET) On Tuesday, February 17th, 2026, the Global MPN Scientific Foundation will host a special webinar focused on everyday life with MPNs in the USA, in collaboration with Oregon Health & Science University (OHSU).This session will feature: • Dr. Joseph Shatzel, Hematologist at Oregon Health & Science University (OHSU) in Portland, USA • Angela Valentine, MPN patient and community voice from the USATogether, they will discuss living with Essential Thrombocythemia (ET), while patient experiences help

🇺🇸 USA Webinar by @GMPNSF
In collaboration with @ohsunews.bsky.social 

🎤 Dr. Joseph Shatzel (OHSU)

📅 Feb 17, 2026
🕘 9AM PST | 12PM EST | 6PM CET

👉 Register & support our work: www.gmpnsf.org/post/usa-webinar-talking...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

MPN LATAM launches its first patient roundtables for the Latin American community MPN LATAM, a regional initiative of the Global MPN Scientific Foundation (GMPNSF), officially launches its first series of patient roundtables for Latin America, creating new spaces for dialogue, shared experiences and community building across the region.As a global foundation, GMPNSF supports people living with MPN worldwide. For MPN LATAM, the main working language of this initiative is Spanish, reflecting the needs and representation of patients and families across Latin America.These new MP

🌎 MPN LATAM (part of @gmpnsf) launches its first patient roundtables for Latin America, in collaboration with Odd Blood Club.

🗓️ 10 Feb 🇦🇷 | 11 Feb 🇲🇽 | 12 Feb 🌎

🔗 www.gmpnsf.org/post/mpn-latam-launches-...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

🩸 February 4 | #WorldCancerDay

People living with Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF) face daily:

😮‍💨 fatigue
🧠 brain fog
😣 pain
🔥 itching

At GMPNSF we support people living with PV, ET and MF worldwide 🌍

👉 Donate: https://www.gmpnsf.org/donate

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

🥗 GMPNSF × Carla Not

New diet diary by GMPNSF and Carla Not, registered nutritionist, to support healthy habits in a practical way.
Simple and realistic food ideas for people living with MPN.

👉 https://www.gmpnsf.org/dietary

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

GMPNSF joins the international Rare Disease Day movement to give a stronger voice to MPN patients 🌍 A global milestone for the MPN communityThe Global MPN Scientific Foundation is proud to share an important international milestone: our CAYAs Symposium “Young & Rare: Shaping the Future Together” has been officially published on the Rare Disease Day international platform, coordinated by EURORDIS.This recognition confirms our commitment to working globally and to creating new international spaces where people living with MPNs can raise their voices and be heard worldwide.Giving young MPN pat

🌍 Global milestone for #MPN patients.

Our CAYAs Symposium Young & Rare is on the @rarediseaseday.bsky.social platform, coordinated by @eurordis.bsky.social

👉 www.gmpnsf.org/post/gmpnsf-joins-the-in...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

Webinar | A pioneering CAR-T therapy targeting mutated calreticulin in myeloproliferative neoplasms (MPN) On February 4th at 7:00 pm (Madrid time), coinciding with World Cancer Day, an online webinar will take place focusing on an innovative line of research in myeloproliferative neoplasms (MPN): the development of a CAR-T therapy targeting mutated calreticulin (mCALR). This webinar is organised by MPN Spain.📅 Date: February 4, 2026⏰ Time: 7:00 pm (CET – Madrid time)💻 Format: Online webinar via ZoomThis session aims to bring research closer to patients and families, explaining in a clear and acces

🔬 Webinar | CAR-T therapy targeting mutated CALR in MPNs

📅 February 4, 2026
⏰ 7 pm CET

Organised by MPN Spain + English access by @gmpnsf.bsky.social

👉 Register:
www.gmpnsf.org/post/webinar-a-pioneerin...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

#5thMPNS 🌍
@mpnjournal.bsky.social, an anonymous tool created by patients and supported by Prof. @rubenmesamd.bsky.social, shows the importance daily tracking.

🎥 www.gmpnsf.org/post/one-mpn-family-yout...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

Symposium CAYAs 2026 | Young & Rare: Shaping the Future Together CAYAs Symposium – Children and Young AdultsOn February 28th, 2026, the Global MPN Scientific Foundation (GMPNSF) will host the CAYAs International Symposium 2026, an online event dedicated to children and young adults living with Myeloproliferative Neoplasms (MPNs), in collaboration with Odd Blood Club and MPN España.Taking place on Rare Disease Day, this symposium aims to create a global, safe and meaningful space where patients, families and healthcare professionals come together to discuss th

Young & Rare | CAYAs Symposium 2026 by GMPNSF with collaboration of Odd Blood Club and MPN España

📅 Feb 28, 2026 | 🕓 16:00–20:00 CET

👉 Register now:
www.gmpnsf.org/post/symposium-cayas-202...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

✍️ NEW Writing Workshop with Puy Barral (MPN patient + facilitator)

📅 Thu, Jan 29 | 🕒 18:30–20:00 CET
✅ FREE for MPN patients & caregivers
🌍 Online | EN + ES
@gmpnsf + MPN Spain

👉 Register: www.gmpnsf.org/post/january-a-journey-t...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

What are MPNs? In this post, we will explain these diseases, what causes them, and what symptoms they may cause.

What does MPN stand for? 🩸 

MPN = Myeloproliferative Neoplasm, a group of rare blood cancers where the bone marrow makes too many blood cells.

📲 We explain the basics + symptoms in our blog: https://www.gmpnsf.org/post/what-are-mpns

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

1 month ago

#5thMPNS

Gabriela Aguirre (MPN Nurse Specialist, @hospitaldelmar.bsky.social) shares how nurse support helps patients understand treatment, and feel supported

👉 www.gmpnsf.org/post/one-mpn-family-yout...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

MPN Voice Virtual Forum: Post-ASH Latest Updates (Registration Open!) We are happy to share an upcoming MPN Voice virtual forum that may be of great value for the global MPN community, focused on the latest updates following ASH.🗓 Friday 16 January 2026🕔 5:00–6:30 PM (GMT)💻 Online event✅ Registration now openThis session will feature expert talks from: • Prof. Claire Harrison (Guy’s & St Thomas’ Hospital) • Prof. Bethan Psaila (University of Oxford) • Dr Alesia Khan (Leeds Teaching Hospital) A live panel Q&A will also take place, with the option to submit que

📢 Register for tomorrow!
MPN Voice is hosting a Post-ASH Latest Updates, featuring expert talks by Prof. Claire Harrison, Prof. Bethan Psaila and Dr Alesia Khan.

👉 Register:
www.gmpnsf.org/post/mpn-voice-virtual-f...

#MPNsm

📸 Photo from MPN Voice

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

#5thMPNS
🌍 MPNs in the USA
Dr. Joseph Shatzel + US patients on daily life with MPNs
🔹 Fatigue & symptoms
🔹 Insurance challenges

👉 Link: www.gmpnsf.org/post/one-mpn-family-yout...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Our first Momelotinib Patient Roundtable of the year took place. 🤝
Patients & caregivers sharing real experiences.

🎥 Soon video available in our YouTube channel: www.youtube.com/channel/UC0uErCR08ZR9lQA...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Exclusive: Video from ASH 2025 Highlights Webinar Now Available Yesterday, we closed the year with an excellent live webinar reviewing the key scientific highlights from #ASH2025, the world’s leading congress in hematology. VIDEO NOW AVAILABLE!This important session brought together two of the most respected voices in the MPN field: • Prof. Ruben Mesa, internationally recognized MPN expert, President of Advocate Health Cancer Institute and Executive Director of Wake Forest Comprehensive Cancer Center (USA) • Prof. Serge Verstovsek, physician-scientist and le

A new era in MPN therapy is here. 🚀
Replay now available with Prof. Serge Verstovsek + Prof. @rubenmesamd.bsky.social sharing key updates and what’s next in targeted treatments.

🎥 Watch: www.gmpnsf.org/post/exclusive-video-fro...

#ASH2025 #MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

#5thMPNS 🌍
MPNs in Saudi Arabia

🎥 Care, access & collaboration
🌍 One doctor, one patient, one global reality

👉 Watch here:
www.gmpnsf.org/post/one-mpn-family-yout...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Patient Roundtable on Momelotinib A safe space to share experiencesOn January 12 at 6:00 PM (CET), the Global MPN Scientific Foundation will host the first Patient Roundtable on Momelotinib of the year, created as a calm, respectful and safe space for patients and families.This session is exclusively for patients and caregivers and will be held in Spanish with simultaneous English interpretation, allowing everyone to participate comfortably.👉 RegistrationThe roundtable offers an opportunity to share personal experiences, talk a

Patient Roundtable on Momelotinib

🗓 Jan 12 | ⏰ 6 PM CET
🌍 Online

A safe space for patients & caregivers to share experiences and talk about daily life with momelotinib.
No medical advice. Just listening & support 🤝

👉 Register: www.gmpnsf.org/post/patient-roundtable-...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

WELLBEING | Global MPN SF

Global MPN Scientific Foundation × Wellbeing Project 🌱

Wellbeing is more than medical results 💊
It’s how we live every day ✨

🧘‍♀️ Qigong | 🧘 Yoga | 🌬️ Breathing | 🤲 Tapping | 🧠 Meditation

👉 https://www.gmpnsf.org/wellbeing

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

January: A Journey Toward a Better Version of You Writing, clarity and wellbeing within the Global MPN Wellbeing ProjectLed by Puy Barral, creative writing facilitator and MPN patient, this writing workshop is part of the Global MPN Scientific Foundation Wellbeing Project and begins in January.This is a 6-month journey designed to support people living with MPNs in cultivating mental clarity, emotional balance and inner peace, through a gentle and continuous process of self-expression.Content guide • Writing as a tool for wellbeing • A holistic

January: A Journey Toward a Better Version of You ✨

✍️ Writing workshop for people living with MPNs
🤍 Led by an MPN patient
🧠 Clarity, balance & strength

🗓 Jan 29 | 🌍 Online | 🎁 Free wellbeing week

📲 Learn more: www.gmpnsf.org/post/january-a-journey-t...

#MPNsm

Vijay G. Sankaran

@bloodgenes.bsky.social

2 months ago

Enjoyed writing this commentary with @g-agarwal.bsky.social for @bloodjournal.bsky.social: ashpublications.org/blood/articl...

Covers an exciting paper from Tapper and co: ashpublications.org/blood/articl...

#mpnsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Research in MPN. History, Present and Future | An Exclusive Interview with Prof. Radek Skoda and Prof. Ruben Mesa As the final surprise of our Advent Calendar, the Global MPN Scientific Foundation is proud to share a very special holiday gift with our community: an exclusive interview with Prof. Radek Skoda and Prof. Ruben Mesa, recorded in connection with one of the most important moments of ASH 2025.This unique conversation brings together two of the most influential leaders in myeloproliferative neoplasms. Both were honored with the Ernest Beutler Lecture and Prize, a distinction that recognizes not only

Prof. Radek Skoda and Prof. Ruben Mesa together for the last Advent Calendar surprise 🎁

A unique conversation on the history of MPNs.

👉 www.gmpnsf.org/post/research-in-mpn-his...

Peaceful holidays 🎄✨

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Exclusive: Video from ASH 2025 Highlights Webinar Now Available Yesterday, we closed the year with an excellent live webinar reviewing the key scientific highlights from #ASH2025, the world’s leading congress in hematology. VIDEO NOW AVAILABLE!This important session brought together two of the most respected voices in the MPN field: • Prof. Ruben Mesa, internationally recognized MPN expert, President of Advocate Health Cancer Institute and Executive Director of Wake Forest Comprehensive Cancer Center (USA) • Prof. Serge Verstovsek, physician-scientist and le

After #ASH2025, MPN experts Prof. @rubenmesamd.bsky.social and Prof. Serge Verstovsek reflect on ET, PV and the growing impact of research in this exclusive video 🧬🌍

🎥 Watch here:
www.gmpnsf.org/post/exclusive-video-fro...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

2 months ago

Advent Calendar | Global MPN SF

🎄 Week 3 of the Global MPN Advent Calendar explored wellbeing, science and daily life with MPN.

📅 December 24 brings a special surprise.

👉 www.gmpnsf.org/advent

#MPNAdvent2025 #MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

3 months ago

Exclusive: Video from ASH 2025 Highlights Webinar Now Available Yesterday, we closed the year with an excellent live webinar reviewing the key scientific highlights from #ASH2025, the world’s leading congress in hematology. VIDEO NOW AVAILABLE!This important sessi...

Yesterday we closed the year with a great webinar on #ASH2025 🧬

Prof. @rubenmesamd.bsky.social & Prof. Serge Verstovsek shared key science, new therapies and what’s next for the MPN community. 🔬

🎥 The full webinar replay is NOW AVAILABLE: www.gmpnsf.org/post/exclusi...

#MPNsm

Global MPN Scientifc Foundation

@gmpnsf.bsky.social

3 months ago

From a daughter’s story to supporting the MPN community 🌿
Meet Tania, personal trainer & occupational therapist, now part of our Wellbeing Project 💪

🔗 gmpnsf.org/wellbeing

#MPNsm