Describe your role in the MPN community.
I am fortunate to have stepped into the leadership role at MPN Research Foundation in late 2020 as the Chief Executive Officer. With the commitment to carry forward the legacy Bob Rosen and the patient community he founded has established to drive meaningful patient-centered research toward new therapies and, eventually, a cure for MPNs. MPN Research Foundation sits uniquely at the intersection of the patient, researcher, and drug developers with the charge to share patients’ voices to better define true unmet needs in treatment that inform a research strategy and advance therapies that lead to meaningful outcomes.
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
People living with a rare disease can often feel alone and misunderstood by family, friends, and sometimes even their doctors. MPNs are a family of blood cancers that are not only rare unto themselves but also present and feel very differently from one patient experience to the next, making them feel even more rare. Acknowledging it, spreading awareness, and making people living with MPNs feel seen, heard, and connected to a community, is critically important and can lead to better outcomes in many ways.
-Kapila Viges, CEO, MPN Research Foundation #MPNRF