Please describe your role in the MPN community.
MPN Advocacy and Education International brings the mountain to the people. In other words, they bring MPN specialists to patients and caregivers across the country and internationally who may never be able to see or hear from an expert on their own. Geography, economics, and other challenges can be very prohibitive to specialized health care. Their educational programs, in person and online, reach over 30,000 individuals in the MPN space per year, and this number is growing exponentially. Not only does MPN Advocacy and Education International host educational programs, but they also offer numerous resources and direction to the entire MPN Community. Their advocacy efforts extend to all areas of healthcare, including access, pricing, women’s specific challenges, pediatric care, and all issues relevant to the quality of care MPN patients deserve.
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
The month of February recognizes rare diseases on a national level. It is significant for many reasons and relevant to the MPN Community as essential thrombocythemia, polycythemia vera, and myelofibrosis are considered rare diseases. Any focus and attention on these myeloproliferative neoplasms are important not only to increase awareness where gaps in understanding the nuances of these rare cancers but also to engage organizations, lawmakers, patients, caregivers, and everyone affected by this diagnosis on a grander scale. It is an opportunity for all organizations, companies, and groups of individuals striving to make positive changes can have a voice. Every day is MPN awareness day for us!
-Ann Brazeau, CEO MPN Advocacy and Education International