The purpose of my research is to uncover and document what rare disease patients value most and how these values can influence the interaction of patients with research.
I am writing to ask if any of your members or a patient representative would be interested in participating in a 30-45 minute interview as part of my research project. This valuable input and perspective will be important to create positive change in the rare disease research landscape, leading to better patient outcomes/experiences. I have attached a scheduling link that can be passed on to those who are interested.
Thank you, and I look forward to your response,
Abby Jung
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