The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.
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Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern.
