• cleveland3

    Save the date!

    The Cleveland Ohio Patient Education Symposium

    When:
    Thursday October 9, 2014

    Where:
    The InterContinental Hotel, Cleveland (Conference Centers)

    Speakers:
    Dr. Yogen Saunthararajah, Cleveland Clinic
    Dr. Raajit Rampal, Memorial Sloan Kettering
    Amy Niles, Patient Access Network (PAN) Foundation

    Additional MPN experts to be announced.

    Click on this slide for more information.

  • 100524-N-4205W-002

    Are You a Vietnam Veteran?

    Do You Have Myelofibrosis (MF), Polycythemia Vera (PV) or Essential Thrombocythemia (ET)?

    Were you exposed to Agent Orange?

    If so please contact us at:
    517.899.6889 or email Ann Brazeau at abrazeau@mpnadvocacy.com

    For additional information and to read Vietnam Veteran Barry's story click on the title above.

  • events-page-1

    Two Patients Share Their MPN Stories

    Kazumi U. shares her story about living with ET and post-ET Myelofibrosis.
    "I was diagnosed as having essential thrombocythemia in the summer of 1992 when I was visiting Japan from the U.S. to care for my ailing mother."

    Marilyn C. was diagnosed with Polycythemia Vera 13 years ago. She wanted to share her journey with other patients, families and caregiverS.
    "My MPN journey began in March 2001. One night I awoke with a burning inside my
    chest. The next day I went to my doctor..."

  • 8266471202_63a8f743a9_b

    Need Help Paying for MPN Treatment?

    More than one-third of people with chronic diseases, including MPNs, have health insurance but still cannot afford the co-payments for specialty medications needed to manage their diseases. That leaves numerous patients with treatments in sight but out of reach. Most pharmaceutical companies have “Patient Assistance Programs” to help make the cost of prescription medications affordable to the patient. Learn more about your options.

  • patientsstory

    Small and Mighty: A Patient’s Story

    If ever there is a “good” time to live with a MPN, it is now. We are fortunate to find community on this rough trail through on-line groups, listservs and networks. Thanks to several incredibly dedicated MPNers and advocates, it is easy to get answers, suggestions, and support from knowledgable people around the world. Guest post by Marina Sampanes Peed

Educational Events

Ruben MesaPictured at left  is Dr. Ruben Mesa, Mayo Clinic,  one of the featured speakers at the San Mateo Patient Education Symposium held on May 22. Click here for Webcasts of all speakers at this event. Slides from the featured speakers of the April 3 Symposium in the Tampa Bay Area are now available. Click on this link. Washington D.C. Symposium  was a great success. You can watch video of all of the featured speakers. Additional Patient Education Events for 2014: The next Patient Education Symposium will be in Cleveland, OH, October 9, 2014. MPN 2014 Events sponsored by the National Organization for Rage Diseases (NORD) (Click for Brochure) NORD event August, 16-Denver

 

Click on the “Learn More” link below for a complete Calendar of Events for 2014, 2015, and 2016 Learn More

Clinical Trials

blood sampleLearn about clinical trials currently in progress for myelo­­fibro­sis (MF), essential thrombo­­cythemia (ET) and poly­cythemia vera (PV).      Current Clinical Trials  Clinical Trial Updates and News:

 

Patient & Caregiver Support

stock1Join with other patients to learn more about your disease and treatment options through an in-person or online support group. Many major cities throughout the United States and internationally host regular meetings. Contact Ann Brazeau if you are interested in establishing a new Support Group for your area : 517.899.6889  abrazeau@mpnadvocacy.com Learn More

Science Advisor: Ruben Mesa

Our scientific advisor is Dr. Ruben Mesa of the Mayo Clinic. Read his latest update: MPN Highlights from the American Society of Hematology

Free Patient Info Pack

Give us your address and we’ll send you a free informational package in the mail. Your contact information will be kept strictly confidential. Sign Up Now

FAQs

What is a myeloproliferative neoplasm? MPNs are a group of rare blood cancers that overproduce blood cells in the bone marrow, and are caused by genetic mutations in the blood stem cells:

  • Myelofibrosis is a rare bone marrow cancer. Bone marrow cells that produce blood cells develop and function abnormally resulting in fibrous scar tissue formation.
  • Polycythemia Vera is a disorder in which the bone marrow makes too many red blood cells. It may also result in the production of too many other types of blood cells – white blood cells and platelets.
  • Essential Thrombocythemia causes the body to produce too many blood platelets-thrombocytes. It can cause abnormal clotting or bleeding. The bone marrow makes too many platelet-forming cells or megakaryocytes, which release platelets into your blood.

Learn More