At the American Porphyria Foundation, we aim to protect the health and well-being of all patients and members. To accomplish this, the APF will only provide you with information that has been written or approved by the porphyria experts on our Scientific Advisory Board. These physicians, along with your own medical professionals, are your resource for health information.
We urge you to be vigilant about who you allow to see your medical information and to be careful about taking advice from fellow patients and other non-professionals. Make sure that you are not sharing your medical records and personal medical data with anyone other than your healthcare provider, especially on social media. Sharing your information with people other than healthcare providers can also compromise your identity. If you have questions about your lab results, please seek help from your healthcare provider. If any medical information is shared with the American Porphyria Foundation, it is immediately shared with members of our Porphyrias Consortium, as we are not medical professionals and do not interpret laboratory information.
If you have any questions, please contact the APF via email at firstname.lastname@example.org or via phone at 301.347.7166. Your health and privacy is important to us!