Opportunities for people living with PNH

Your lived-experience as a person diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) has value. All PNH patients deserve to receive the Fair Market Value for participating in studies and market research. We are determined to ensure that all market research practices and community engagement is executed in a conscious and respectful manner.

You have the power to report your experiences (whether positive, negative or a combination of both) with any market research company conducting research on PNH to the Rare Advocacy Movement's Rare360 Market Research Ethics Review Board. By sharing your experiences, you help to make market research within the pharmaceutical industry a better experience for the people of the rare disease community.