Education and Advocacy

Learn about our education and advocacy initiatives below:

Education

  • Promote physician education in MPN science and treatment through our Rounds program
  • Provide free information to patients, their friends, and families through regular updates, newsletter and website
  • Assist the Chicago Roundtable in their goal of highlighting Chicago as a center of MPN science
  • Collaborate with patients on the formation and success of patient support groups

Advocacy  

  • Lobbied successfully for inclusion of MPN’s in SEER data and more accurate ICD.9 codes to promote more accurate counts of the number of MPN patients nationally.
  • Succesfully convinced insurance company Cigna to cover Pegasys for MPN patients while continuing to pursue other insurers
  • Co-funded a Yale epidemiology study determining the total numbers of Polycythemia Vera and Essential Thrombocythemia patients in America.
  • Sponsoring Chicago Roundtable, an innovative multi hospital group of Chicago clinicians seeking ways to coordinate and expedite clinical trials of candidate drugs and to provide educational forums for other clinicians in the area.
  • Ongoing investigation of reimbursement issues faced by MPN patients including the initiation of inclusion of MPN non-FDA treatments in Compendia used by insurance companies when deciding reimbursement issues.

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Sarah

Polycythemia Vera (PV)

Meet Sarah

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