MPNRF Blog

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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Update on Medicare Coverage Decision for Stem Cell Transplant in Myelofibrosis

The Centers for Medicare & Medicaid Services’ Coverage and Analysis Group released a proposed decision memo Thursday on modifications to the National Coverage Determination for allogeneic Stem Cell Transplant. CMS has proposed to expand coverage through Coverage with Evidence Development (CED) for allogeneic HCT to include myelofibrosis, multiple myeloma and sickle cell disease. [...]

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Silvana-ET

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T December 19th, 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.  [...]

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How to Help a Sick Friend

What can I do to help?" is probably the most common thing we say to a friend who is ill or in need. But despite our best intentions, this may not be the best way to lend a helping hand. When a person is diagnosed with an MPN blood cancer, patients often feel too overwhelmed or too proud to know how to respond. Now, here's some ways for you to support a sick friend. [...]

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