Have you checked out the APF Facebook groups recently? Did you know APF has seven Facebook groups? We moderate one public group along with six private disease-specific groups that you can request to join. The communities are very active and it is a great way to connect with other porphyria patients and caregivers. In addition, the APF regularly posts publications, research, updates and other educational information As an ultra-rare condition it can seem like you are alone but YOU ARE NOT! ….come join us!
Below are the Official 7 APF Facebook Groups
Porphyria - American Porphyria Foundation
APF: Porphyria - AIP, HCP, VP
APF: Porphyria - PCT
APF: Porphyria - EPP
APF: Porphria - CEP
Porphyria International Support & Education Group