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MPN Research Fdn
We’re a patient-centered research foundation that exists to change the prognosis for those affected by MPNs.
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MPN Research Fdn Aug 16
Replying to @MPNAdvocate
At the medical meetings, yes. But often they are presenting based on published work that is available globally.
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MPN Research Fdn Aug 16
Breaking MPN drug news: Inrebic (fedratinib) approved for - first drug approved for MF in almost a decade!
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MPN Research Fdn Aug 15
We may just need more Twitter chats focused on MPN :)
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Naseema Gangat Aug 15
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MPN Research Fdn Aug 15
Very exciting...hope to see this taken further
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MPN Research Fdn Aug 15
Phase 1 trial made the cover of Clinical Cancer Research! The study, of alisertib, demonstrated normalizing of blood counts & bone marrow as well symptoms and spleen for a statistically significant number of trial participants.
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MPN Research Fdn Aug 15
We know many couples where the partner NOT living with an MPN is the one who is the main advocate.
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MPN Research Fdn Aug 15
That's all for ! Thank you, Dr. and everyone for taking the time to join in. If you missed the chat you can visit our website:
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MPN Research Fdn Aug 15
Q9: Finally, what recommendations or words of hope would you like to share with other patients living with an MPN?
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MPN Research Fdn Aug 15
Q8. What are some of the biggest challenges of living with an ?
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MPN Research Fdn Aug 15
There are patient versions of the NCCN guidelines for MPN which we will happily send anyone interested
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MPN Research Fdn Aug 15
Replying to @AaronGerds
And the initial diagnosis is just the start. Wonder how often people with an MPN have a diagnosis change. OR how often they receive follow up genetic testing
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MPN Research Fdn Aug 15
Q7. Aside from medication, how do you manage the symptoms of your ?
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Aaron Gerds MD, MS Aug 15
Replying to @MPN_RF
Often a diagnosis of PV, ET, or MF does not tell the whole story!
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MPN Research Fdn Aug 15
Q6. How do the symptoms of your impact your daily life?
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MPN Research Fdn Aug 15
Q5: Do you live with daily symptoms?
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MPN Research Fdn Aug 15
Replying to @fleedogs1
MPNs were categorized as blood disorders until 2009/10
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MPN Research Fdn Aug 15
Q4. Did you get a second opinion or seek out a Hematologist that specializes in after your diagnosis?
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MPN Research Fdn Aug 15
Q3: What was more concerning to you, learning that are a rare disease or that they are a blood cancer?
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MPN Research Fdn Aug 15
We hear this from people with MPN, and often.
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