American Porphyria News

  • Sep 21, 2022

An important update from us.

 

 

 
 

 

AMERICAN PORPHYRIA COMMUNITY NEWS

 

 

 
 

 

 
  • LOVE IS IN THE AIR. Eileen Hudson, who heads the Chile Porphyria Sociey , married fiane Kike Williams in Santiago , Chile, September 10, 2022. APF President , Warren Hudson, and fiance, Dr. Judith Miller, APF Scientific Advisory Board Member, will marry Oct 15, 2022 and APF board member, Nicole Castelanno and her fiance , Mike Lynch. Congratulations to you all!!!

 

 
 

 

 
 

 

APF PRESIDENTIAL AWARD WINNER , SANDRINE GIRADOT AND THE RECORDATI RARE DISEASE TEAM for their humanitarian actions to provide NORMOSANG/human hematin to the acute patients in Ukraine and the refugees throughout europe.

The Recordait Team is assisting with this tragic situation at no charge as are the other medical teams who are providing care.

To add to the desperate situation in the Ukraine for porphyria patients is there is now NO ABILITY FOR DIAGNOSIS. The Recordati Team continues to provide treatment but is impeded by the lack of diagnosis. See the upcoming newsletter for the full story.

 

 

 

 
 
 

 

 

 

 

 

 

 

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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