American Society of Hematology Conference Features Exciting MPN Updates Including MPNRF Funded Research Normally the annual meeting of the American Society of Hematology (commonly referred… Read More »ASH CONFERENCE FEATURES EXCITING MPN UPDATES INCLUDING MPNRF FUNDED RESEARCH
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!
I was hired by the MPN Research Foundation in May 2016 to spearhead the development and launch of the first ever patient driven registry. At… Read More »HOW WE CAN HELP MOVE MPN RESEARCH FORWARD TOGETHER
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
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?
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… Read More »TAKE ACTION NOW-MEDICARE IS ABOUT TO SET STANDARDS FOR MYELOFIBROSIS RELATED STEM CELL TRANSPLANTS