MPNRF Blog

February 29th is Rare Disease Day: 4 Reasons You Should Care

Even though MPN patients who have a rare disease many may have never heard of "Rare Disease Day" and know next to nothing about the impact rare disorders have on society. Rare diseases play a larger role in public health than most people realize and deserve consideration from the medical community, policy makers, and the general public. [...]

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It's World Cancer Day

There has been, from time to time, a question about whether myeloproliferative neoplasms are cancers. Let’s be clear, they are. But don’t take our word for it. [...]

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MPN Community Joined by Legislators in Speaking up on Medicare's Plan for Myelofibrosis

For the past several months we've kept you informed and taking action on Medicare's pending decision of whether to provide coverage for people with myelofibrosis seeking a stem cell transplant. Currently there is no official ruling from Medicare on whether this treatment is covered, leaving many patients to risk paying out of pocket (running potentially several hundred thousand dollars) or scrambling to find alternative ways to cover it.  [...]

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Nature Medicine: Drug Stops Reproduction of Cancer Cells in Myelofibrosis

According to a paper published in Nature Medicine, the drug MLN8237 (or Alisertib) has reduced tumor cells, blood counts and fibrosis in mouse models of myelofibrosis. Reports John Crispino, PhD, "This new paper shows that Alisertib has an anti-tumor effect in samples of myelofibrosis, similar to what we saw in megakaryocytic leukemia." 
John Crispino is also the Scientific Advisor for the MPN Research Foundation. [...]

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Take Action Now-Medicare is About to Set Standards for Myelofibrosis Related Stem Cell Transplants

On October 29, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule allowing Medicare coverage for stem cell transplants in approved clinical trials for Myelofibrosis (MF) patients. Unfortunately, some of the requirements in the proposed rule would actually decrease access to stem cell transplants. View the proposed decision memo by CMS. [...]

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Double Your MPN Donation

Do you want to double your dollars? A $25,000 Matching Gift Fund has been setup by a group of generous donors. That means that a gift of $100 made on Giving Tuesday, December 1st will become $200 to help find better treatments and a cure for MPNs. Give to the MPN Research Foundation on Giving Tuesday, December1st.  [...]

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Is This the Beginning of Gene-Editing Medicine?

Does the smiling face of Layla Richards mark a new era in genetic medicine that could change all our lives? [...]

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Notes From CR&T MPN Symposium

There were many interesting sections from today's meeting. Bill Crowley from the MPN Research Foundation was on the ground at the event and shared some highlights: [...]

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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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