Porphyria News developed a survey, with the support of the APF, to "bring clarity to our collective understanding of life with porphyria." The initial survey will develop a baseline for the porphyria community; with the possibility of subsequent surveys to compare the baseline to life with porphyria. This survey is intended for all impacted by Porphyria including patients, caregivers, medical professionals, family members, etc.).
The APF will coordinate with Porphyria News to share the results of the survey.
To participate in the survey click on the link below.