Describe your role in the MPN community.
As a previous MPN patient, my role in the MPN community transects the experience of having lived with the disease for ten years to now being a post-transplant mentor and educator. As the Founder of MPN Peoria, I continue its mission of raising awareness and funding into novel MPN therapies in hopes of my lifelong dream to see a cure besides stem cell transplantation for myeloproliferative neoplasms.
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
Rare Disease Month/Day provides the backdrop to showcase the millions of people worldwide who live with rare diseases that are under-researched and under-funded. Regarding those living with an MPN, it allows patients who may feel isolated living with this rare disease to recognize that they are not alone in their journey. It also rallies the community, the medical establishments, and the lawmakers to continue to recognize and prioritize the unique challenges that patients living with MPNs and all the other rare diseases face.
-Dr. Michele Couri