Enews 3/23/2020

  • Mar 23, 2020

March 23 , 2020


Porphyria Post

COVID-19 Message from Porphyria Expert Dr. Bruce Wang


Porphyrias Consortiums expert, Dr. Bruce Wang, University of California San Francisco (UCSF), shares a video message with the porphyria community regarding COVID-19. Dr. Wang reviews the effects of the virus on patients with porphyria, and also advises on preventative care measures.

Click Here to View Dr. Wang's Video: https://drive.google.com/file/d/1ATx5pFSkSkIhwJb1eQNFZN4WX7JHmC5D/view?usp=sharing


Porphyria Partners


You aren’t alone! Many of our members are isolated at home, possibly away from loved one and medical professionals. However, we can come together as partners in this time of need. During the COVID-19,the APF has created a simple way to feel less alone and to connect with others in our community through Porphyria Partners. No social media required, just a willingness to check in with another porphyria warrior each day.

If you are interested in being partnered with another person, please email general@porphyriafoundation.org or call 866-APF-3635 with your name and email address. We will connect you with another member via email. We ask that you make contact with each other and check in with each other each day in the best way for each of you.

We look forward to hearing from you!


Stay Up-to-Date with the APF


The APF website www.porphyriafoundation.org will be updated regularly with information related to COVID-19. The The APF is dedicated to continue our mission of support to those with porphyria and their families. We will be continuing in our efforts to provide this support, education and advocacy to our community through our E-News and other social media platforms.

Our staff is available by

Phone: 1-866-APF3635

Email: general@porphyriafoundation.org

Facebook: https://www.facebook.com/


Statement from Recordati Rare Diseases


Recordati Rare Diseases, manufacturer of Panhematin and Normasang, is working hard to ensure their supply of treatment remains uninterrupted.

Recordati Rare Diseases is committed to the well being of patients living with rare diseases. It’s our first priority to help protect the safety and lives of patients around the world. We will continue to endeavor maintaining a constant supply of our critical care products.

Please contact APF office at: 1-866-APF3635, if you experience an issue with access to treatment.


Coronavirus Statement from the APF and the Porphyrias Consortium

The American Porphyria Foundation and the physicians of the Porphyrias Consortium (PC) encourage our members and patients to follow the guidelines recommended by the Centers for Disease Control and Prevention (CDC) regarding Coronavirus, which causes COVID-19. The guidelines from the CDC and the PC to prevent the spread of COVID-19 are on the APF Website.

Click Here to View the PC & CDC COVID-19 Guidelines


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Contact Information

Is your contact information up to date?

If not please give us a call @ 866-APF-3635 or Email to general@porphyriafoundation.org

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org



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