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    Updates from Summer Hematology Meetings: The American Society of Clinical Oncology Meeting; European Hematology Associaion Meeting

    Dr. Ruben Mesa, M.D. Mayo Clinic Cancer Center Provides Recent Updates from Summer Hematology Meetings: the American Society of Clinical Oncology Meeting, Chicago, IL; European Hematology Association Meeting, Milan

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    Watch the MPN Patient Education Symposium Held in San Mateo, CA on May 22

    May 22, 2014 San Mateo CA

    Dr. Ruben Mesa, Mayo Clinic- Scottsdale, AZ
    "Unmet Needs in MPNs and Current Clinical Trials"

    Dr. Jason Gotlib, Stanford University- Stanford, CA
    "Mutation/ Biology: New Data on CALR"

    Dr. David Snyder, City of Hope- Duarte, CA
    "Transplants and Imetelstat"

    Dr. Catriona Jamieson, UCSD- San Diego, CA
    " New Diagnostic and Therapeutic Targets in MPN"

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

    There is still an opportunity to participate in the last of three broad based surveys of MPN patients. The final questionnaire is a landmark health survey administered by the Cancer Support Community that is comprehensive across all MPNs - essential thrombocythemia, polycythemia vera, and myelofibrosis. This involves physicians and patients and is focused on issues of symptoms and communication between patients and their physicians regarding symptoms, and has the goal of trying to optimize care.
    Click on this slide to link to the current MPN survey for patients and physicians.

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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..."

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, Fall 2014. Date to be announced. MPN 2014 Events sponsored by the National Organization for Rage Diseases (NORD) (Click for Brochure)

  • July 19, 2014- Los Angeles
  • August 16, 2014- 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. Columbus Ohio Support Group is forming. Contact Judy at: judyMPN@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