MPN Advocacy
MPN Advocacy & Education International advocates on behalf of those affected by myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). As a rare disease, the needs of those with myeloproliferative neoplasms (MPNs) often go unrecognized. Our advocacy efforts extend beyond responding to the unmet needs of the MPN Community. We identify concerns in a meaningful and productive way and create initiatives that impact quality care, treatment access, new drug development and represent MPN patients and organizations who are unable to address the issues surrounding a blood cancer diagnosis.
Working on Behalf of Vietnam Veterans
MPN Advocacy and Education International is actively working on behalf of Vietnam Veterans who were exposed to Agent Orange/Dioxin and now have essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF). Our goal is to add myeloproliferative neoplasms (MPNs), to the VA's ‘presumptive’ list of conditions resulting from exposure to Agent Orange to ensure benefits and compensation are appropriated.
Vietnam Veterans Survey
MPN Advocacy & Education International has been working on a new research project with Georgetown University and the Veterans Administration (VA) office that is a survey to better understand the quality of life of Vietnam Veterans living with MPNs, the treatment they receive, their exposure history, and any cardiac complications. If you would like to fill out the short survey, please follow the link below. We would also welcome responses from the spouses/partners of Vietnam Veterans who have passed. If you have any questions, please email Natalie Giocondo at ngiocondo@mpnadvocacy.com