Contact UPA at 800-868-1292 or info@porphyria.org
This comic book was developed as a resource for children (of all ages!) based on this evidence-based publication on psychosocial issues:
“Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced by patients and families. To address this, an online focus group study was conducted to explore the perspective of parents of children with EPP, and young adults and children with EPP.”
Naik, H., Shenbagam, S., Go, A. M., & Balwani, M. (2019). Psychosocial issues in erythropoietic protoporphyria - the perspective of parents, children, and young adults: A qualitative study. Molecular genetics and metabolism, 128(3), 314–319. https://doi.org/10.1016/j.ymgme.2019.01.023
