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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. 

60 Minute Virtual Interview

Paying $200.00
Those who successfully complete the virtual interview will receive $200.00 as compensation for their time and valuable opinions.

For people 18 years or older diagnosed with PNH, Living in the United States

Seeking 35 Participants.

Take the survey to see if you qualify. If you qualify, you will be guided to complete a mandatory consent form to participate. Upon submitting the consent form, you will be guided to provide your availability so that your 60-minute interview may be scheduled. 

30 Minute Online Survey

Paying $160.00

For people 18 years or older diagnosed with PNH, Living in the United States

Seeking 100 Participants.

This survey was made available to the community last year (in 2022) through other platforms. The market research team is currently looking for more people to participate. If you have not yet participated, you will receive a unique link to complete the survey via email. Kindly click on the following button to determine if you have not yet participated in this study.

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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