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    San Mateo, CA Symposium May 22, 2014

    Guest Speakers:
    Dr. Ruben Mesa, Mayo Clinic
    Dr. Jason Gotlib, Stanford
    Dr. David S. Snyder, City of Hope
    Dr. Catriona Jamieson, UCSD
    Dr. David Leibowitz, Palo Alto Medical Foundation
    Two Patient Stories

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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 click on the title above.

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    Letter from Dr. Ruben Mesa, Mayo Clinic, Regarding Upcoming MPN Surveys

    "This spring of 2014, three different survey projects are underway, each intended to yield valuable information to continue improving MPN patient outcomes. This note will hopefully help clarify the goals of these three projects, especially for those who may choose to contribute to all three initiatives"

    Click on this slide to read the entire letter from Dr. Mesa and to link to the April 2014 patient survey.

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    A Patient’s Journey

    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 MesaNext Event: San Mateo, CA,  May 22,   Click for additional information.

Pictured at left  is Dr. Ruben Mesa, Mayo Clinic, who will be one of the featured speakers at the San Mateo Patient Education Symposium.

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:

  • May 22, San Mateo, CA
  • September, San Diego, CA
  • October,  London

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).

Myelofibrosis ET and PV
Clinical Trial Updates:

 

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.

Tampa Bay Area Support Group will meet on Sunday, May 4,2014 at 1:00 p.m. Click here. Contact Natalie at 727.258.1115

Columbus Ohio Support Group is forming. Contact Judy at: judyleeswtaddy@yahoo.com  for additional information.

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