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    Women and MPNs

    Meet the women in the trenches of MPNs. A new profile of MPNs is emerging, as younger patients are being diagnosed and new issues are being recognized by the MPN medical community who see women experiencing additional challenges who have myelofibrosis, essential thrombocythemia, and polycythemia vera.

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    Save the date!

    The Cleveland Ohio Patient Education Symposium

    When:
    Thursday October 9, 2014

    Where:
    The InterContinental Hotel Conference Center
    9801 Carnegie Ave
    Cleveland, OH 44106

    Speakers:
    Dr. Betty Ky Hamilton, 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.

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    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.

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    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..."

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    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.

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 Rare 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

 

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