COVID-19 & Porphyria – Needs Assessment

The American Porphyria Foundation (APF) designed a short survey to assess the burden that COVID-19 (Coronavirus) is having on our community members. This information gathered helped us create programming that will be most meaningful and informative to you. The APF will continue to share updates regarding COVID-19 in collaboration with the expert physicians of the Porphyrias Consortium and our pharmaceutical partners. Below are results from questions asked on the survey.

Please click the link below to contribute to this survey if you have not already done so.



1. Please indicate your type of Porphyria.


2. How anxious are you or your family member about contracting COVID-19 along with being diagnosed with Porphyria.


3. Have you had trouble gaining access to treatment since this pandemic began (Panhematin, Givlaari, Pain Medication, Etc.)? If yes, please describe.


4. How are you managing your medical appointments?


5. Do you feel that your medically necessary care has suffered due to COVID-19?


6. Are you willing to share your concerns with the APF regarding Porphyria and COVID-19?


7. On a scale of 0-10, how stressed have you been since this pandemic started?