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Opportunities for people living with PNH

Your lived-experience as a person diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) has matters, has value and provides you with the opportunity to contribute to market research. In partnership with the Rare Advocacy Movement (RAM), we work to ensure that all market research practices and community engagement activities through rare360 are executed in a conscious and respectful manner. 

Demand Accountability

You have the power to report your experiences (whether positive, negative or a combination of both) with any company or agency conducting market 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 conducted on behalf of the pharmaceutical industry a better experience for the people of the rare disease community.

Subscribe to PNH Market Research

Interested in subscribing to the PNH rare360 Perspectives, Insights & Experiences (P.I.E) program? By subscribing you will be amongst the first to know about earning opportunities for your lived experiences as a person diagnosed with PNH. All earning opportunities are set at the Fair Market Value as identified by the Rare Advocacy Movement.
Subscribe by clicking on the button below.

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