Friends of Essential Thrombocythemia, Inc dba Friends of ET Research

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Friends of Essential Thrombocythemia, Inc dba Friends of ET Research To raise funds for the rare blood cancer/bone marrow disorder known as Essential Thrombocythemia (ET.)

Founded in the year 2000, we have raised more than $872,322 to support research initiatives.

10/20/2026

This is why we have partnered with the MPN Research Foundation since the year 2000 to help fund vital research initiatives.

MPN Research Foundation:

The pace of innovation in myeloproliferative neoplasms (MPNs) continues to accelerate. Over the past several weeks alone, we have seen multiple developments that reflect both the strength of today’s therapeutic pipeline and the growing momentum across the MPN landscape.

Recent developments include:

• Takeda's approval of rusfertide (MIMRYLO™) for polycythemia vera (PV), introducing a first-in-class approach designed to address hematocrit control and reduce phlebotomy burden.

• PharmaEssentia's label expansion of BESREMi® into essential thrombocythemia (ET), bringing the first new FDA-approved therapy for ET in nearly three decades and expanding treatment options for patients living with this chronic blood cancer.

•pharma&'s manufacturing and supply-chain milestone for Pegasys®, helping to support stable and reliable, long-term treatment availability and continuity of care for patients who rely on peginterferon therapy.

• Karyopharm's submission seeking approval of selinexor plus ruxolitinib for myelofibrosis, a development that continues the field's evolving conversation around endpoints, overall survival, and how we define meaningful clinical benefit in MPNs.

These milestones highlight an important reality: MPN research is advancing on many fronts at once, from new approvals and label expansions to manufacturing investments, and emerging discussions this conference season.

For the MPN Research Foundation, these announcements underscore the importance of intentional engagement across the research ecosystem. We are dedicated to our mission to convene all MPN stakeholders; aligning patient needs, scientific opportunity and real-world implementation.

A very lengthy paper on how to improve disease progression risk in the MPNs. It’s quite technical. The MPN Patient Regis...
10/05/2026

A very lengthy paper on how to improve disease progression risk in the MPNs. It’s quite technical. The MPN Patient Registry is cited as being critical to improved predictions. If you have not yet registered you can do so at www.mpnresearchfoundation.org.

FROM THE ARTICLE: “Progression prediction in MPNs remains an unmet need. Current frameworks lack standardized biomarkers, reliable predictive models, and validated surrogate endpoints—gaps that result in suboptimal patient care and missed therapeutic opportunities. Therefore, precision medicine approaches are required to improve the outcomes of patients.”

https://www.nature.com/articles/s41375-026-03103-0

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09/28/2026

I am not sure if the link below is going to work, as I am having difficulty posting the PubMed link to a new and interesting publication about emerging technologies in treatment:

Myeloproliferative Neoplasms September 28th- From Clonal Expansion to Clonal Eradication: Is a New Era Beginning in Myeloproliferative Neoplasms?

You might need to copy the link and paste it in your browser.

The article discusses emerging therapies that target the mutations involved (CALR and JAK2) using immunotherapy and inhibitors could provide long lasting relief and maybe even eradicate the malignant clone.

For our women out there who are living with an MPN. This annual conference “Women and MPNs” is a major informative and e...
09/24/2026

For our women out there who are living with an MPN. This annual conference “Women and MPNs” is a major informative and educational opportunity to learn more about the gender differences in symptoms and treatment issues. It’s a great resource for you.

Courtesy of Advocacy and Education International

MPN Advocacy & Education International hosted their 12th Annual Wom...

A few more photos you can share to your page to help raise awareness of the rare MPN bone marrow cancers. So many people...
09/20/2026

A few more photos you can share to your page to help raise awareness of the rare MPN bone marrow cancers. So many people have never heard of ET. You can let them know this rare, orphan disease exists.

More photos you can all share to help raise awareness for ET and the other MPNs.
09/19/2026

More photos you can all share to help raise awareness for ET and the other MPNs.

Here is more information for the small percentage of you (up to 10%) that are triple negative for the 3 main genetic mut...
09/19/2026

Here is more information for the small percentage of you (up to 10%) that are triple negative for the 3 main genetic mutations.

Lack of demonstrable mutations affecting JAK2, CALR, or MPL driver genes within the spectrum of BCR-ABL1-negative myeloproliferative neoplasms (MPNs) is currently referred to as a triple-negative genotype, which is found in about 10% of patients ...

Here is some information on the small percentage of ET patients who are triple negative. FYI.
09/17/2026

Here is some information on the small percentage of ET patients who are triple negative. FYI.

Lack of demonstrable mutations affecting JAK2, CALR, or MPL driver genes within the spectrum of BCR-ABL1-negative myeloproliferative neoplasms (MPNs) is currently referred to as a triple-negative genotype, which is found in about 10% of patients ...

You are not alone. Raise Awareness for MPNs! Please share this photo.
09/12/2026

You are not alone. Raise Awareness for MPNs! Please share this photo.

Folks, Besremi, which is now approved by the FDA for treating ET, took 30 years! It is the first medical treatment for E...
09/02/2026

Folks, Besremi, which is now approved by the FDA for treating ET, took 30 years! It is the first medical treatment for ET FDA approved in 3 decades. Change sometimes doesn’t happen as fast we need it to, but, here we are. FINALLY! So much to be grateful for.

https://www.bioreview.com/fda-besremi-approval-essential-thrombocythemia/?fbclid=IwdGRleAUFkFFwZG9mBWZkaWQWUNorAWuKmgsJ9kHOptFzLfxWdfYh02V4dG4DYWVtAjExAHNydGMGYXBwX2lkDzE3Mzg0NzY0MjY3MDM3MAABHsJ4sU-4xSxmzktG8XznOqn96B0e8kJGNC4LvyeYs0a2SCVLSj-TRgNKGo9Q_aem_V-uSZDV15BZsNQ6Najtuqw

After nearly three decades, hematologists finally have a new tool. BESREMi represents a paradigm shift in ET treatment—from symptom management to molecular remission.

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