Researchers in the Porphyrias Consortium are conducting a focus group study for parents of children with Congenital Erythropoietic Porphyria (CEP) and adults with CEP to better understand the experiences of patients and parents, and the issues they face, and to gather more information about CEP.
We will be conducting the focus groups online over Zoom. Each group will be a discussion led by the researchers and will consist of about four to eight participants. You will only need to participate in one focus group and it is expected to last for about 2 hours.
If you are interested in participating or learning more please email and we will connect you with the researchers!