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PAXLOVID HAS BEEN DEEMED UNSAFE FOR ACUTE PORPHYRIAS. PAXLOVID is an investigational drug for the treatment of mild to moderate COVID 19 in adults and children ( 12 yrs of age and older). If you have an acute porphyria, aip, vp, hcp and adp, please check the APF drug list for safety information.
APF AND CAP COLLABORATE The American Porphyria Foundation and the Canadian Association for Porphyria are collaborating to help bring SCENESSE TREATMENT FOR EPP into Canada. SCENESSE is an implant that enables EPP people to tolerate life in the sunlight. EPP people with SCENESSE are reporting their hikes, sporting events, working environment improvements and other wonderful events in a normal life, If you are interested in the SCENESSE TREATMENT SEE Scenesse.com . If you have EPP and want to help with this important effort, please contact the APF at toll free 866 APF-3635
MAYRA MARTINEZ Was recently selected for the APF Member Advisory Board. Mayra, who suffers from AIP, has been an outstanding porphyria advocate . Her videos on the disease, the pain of an attack and her husband, Wilson, as a caregiver ,have assisted innumerable patients who need to know they are not alone in their difficult journey. Mayra lives in San Diego where she is CEO of M Squared Talent Solutions. Mayra always has a hand outstretched to help her fellow porphyria friends. Thank you Mayra and welcome to the APF team.
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