• Community Care Survey

    Identifying EPP and XLP healthcare providers

  • Purpose: Disc Medicine, Inc. (Disc), a clinical-stage biopharmaceutical company, is conducting this survey to better understand where patients with erythropoietic porphyria (EPP) and X-linked porphyria (XLP) are receiving care within their community. Disc is gathering this information in order to provide accurate, up-to-date medical and scientific information to healthcare providers who are treating EPP and XLP patients. 

    By participating in this survey, you acknowledge and authorize the use and disclosure of your responses in accordance with applicable federal and state privacy laws. Your participation is voluntary, and you can decline to participate or continue participating at any time. All responses to this survey will remain confidential and reported in aggregate, which means Disc will only receive information that cannot identify you as the responder. 

  • What type of healthcare provider, outside of a Porphyria Center of Expertise*, primarily manages your EPP/XLP?

  • * Porphyria Centers of Expertise include the following physicians (alphabetical by last name): Anderson, Balwani, Beavan, Bonkovsky, Dickey, Erwin, Karp Leaf, Keel, Levy, Mazepa, McGuire, Quigley, Parker, Thapar, Wang.

  • What specialty does your primary EPP/XLP provider practice?
  • Format: (000) 000-0000.
  • How did you find or get referred to this provider?
  • Have you had difficulty finding a provider experienced in treating your EPP/XLP?

  • Optional. Please provide your contact details. Contact information will remain confidential and will not be shared with any third party, including Disc Medicine.

  • Format: (000) 000-0000.
  • Should be Empty: