top of page
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
(audio only, no camera)
For newly diagnosed with PNH (diagnosis received after September 2022) or those who are currently participating in clinical trials for PNH treatments, living in the United States.
Click the button below to answer the screening questionnaire. Upon completion, you will be guided to complete a 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.
30-40 Minute Online Survey
For people 18 years or older diagnosed with PNH, Living in the United States
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.
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.
bottom of page