On Monday, September 16th, twelve courageous people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis took the stage in Bethesda, MD at the Externally-Led Patient-Focused… Read More »BRINGING THE VOICE OF MPN TO THE FDA
An Inspiration in the MPN Community “I thought I had fleas” the itching was that bad. I threw out mattresses; and after many appointments with… Read More »AN INSPIRATION IN THE MPN COMMUNITY
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
When I was first diagnosed with Essential Thrombocythemia in my mid-thirties, I read through the many sources of conflicting information found online. It left me… Read More »PATIENT GUEST BLOGGER MELISSA WILDER TALKS DIAGNOSIS,HEALTH WELLNESS & NUTRITION
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
Over the last few months, one of our stars has been quietly completing a truly remarkable achievement. Rochelle Moore is about to complete her 4th century… Read More »A SPECIAL LOVE STORY
The strength of a community is determined by how well it is able to take care of itself. How strong is the MPN community? When… Read More »THE STRENGTH OF THE MPN COMMUNITY
During the month of April, blogger Lina will be participating in WEGO Health’s #hawmc. The Health Activist Writer’s Month Challenge will have her writing every… Read More »HEALTH ACTIVIST AND BLOGGER TAKES ON A MONTH LONG WRITING CHALLENGE WITH A FOCUS ON ET
We took a few minutes to talk with Jean about her experiences as a Support Group Leader. Prepare to be inspired! Why did you become… Read More »MPN SUPPORT GROUP LEADER-JEAN DIESCH
