Porphyria News Opens Survey to Gain More Insight Into Disease Community

Porphyria News Opens Survey to Gain More Insight Into Disease Community

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Porphyria News Opens Survey to Gain More Insight Into Disease Community

Porphyria News is conducting an online survey with the goal of gaining greater insight into the characteristics of the porphyria community, their experiences in managing the disease, and their needs. It takes an all-comer approach, meaning everyone is invited to participate, including patients, caregivers, family members, researchers, and healthcare professionals. The survey was designed to take no more than 15 minutes to complete, and includes up to 35 questions focused on demographics, socioeconomics, disease symptoms,…

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