You may have heard that MPNRF, along with fellow MPN advocates, is holding an externally-led Patient Focused Drug Development meeting with the FDA this September. If you are… Read More »LET THE FDA KNOW ABOUT YOUR EXPERIENCE LIVING WITH PV, ET OR MF!
The MPN community is discussing the article by MPN researchers from MD Anderson – Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation – a retrospective study… Read More »BLOOD ARTICLE DISCUSSES EPIGENETIC CHANGES IN MYELOFIBROSIS FOLLOWING DISCONTINUATION OF RUXOLITINIB
Parterships are Important. They bring people together in pursuit of a common cause and put many minds to work on a problem, increasing the likelihood… Read More »THE IMPORTANCE OF PARTNERSHIPS IN THE MPN COMMUNITY
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.… Read More »IT’S WORLD CANCER DAY
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… Read More »FEBRUARY 29TH IS RARE DISEASE DAY: 4 REASONS YOU SHOULD CARE
On Friday, December 2, recipients were announced at the MPN Heroes Celebration Event, hosted by CURE magazine, during the 58th American Society of Hematology’s annual meeting in… Read More »MEET THE 2016 MPN HEROES
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… Read More »SILVANA-ET
The Centers for Medicare & Medicaid Services’ Coverage and Analysis Group released a proposed decision memo Thursday on modifications to the National Coverage Determination for… Read More »UPDATE ON MEDICARE COVERAGE DECISION FOR STEM CELL TRANSPLANT IN MYELOFIBROSIS
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… Read More »NOTES FROM CR&T MPN SYMPOSIUM
Does the smiling face of Layla Richards mark a new era in genetic medicine that could change all our lives? The story of Layla Richards… Read More »IS THIS THE BEGINNING OF GENE-EDITING MEDICINE?
