Statements on Availability of Treatment

The American Porphyria Foundation will continue to provide updates regarding access to FDA-approved treatments and ongoing clinical trials related to porphyria.  If you are experiencing an issue with access to treatment, please contact the APF for support on 866-APF-3635 or general@porphyriafoundation.org.

NOTE:  TREATMENT OPTIONS FOR ACUTE PATIENTS WITH RECURRING ATTACKS DURING COVID-19 CRISIS: 

Acute patients with recurring attacks may need an option for Panhematin treatment as Emergency Departments (ED) and Hospitals (for inpatient treatment) are overwhelmed with COVID-19 patients. 

Treatment at an infusion center may be the next best option. To prepare for this: 

1. 1. Contact your physician as they will need to coordinate advance arrangements and ensure that they have privileges at an infusion center to order Panhematin.
2. 2. Bring information to infusion center staff who may not be educated on Panhematin dosing and administration.
   • This website https://www.panhematin.com/healthcare-professionals/dosing has a good administration guide and video.
   • Contact information for the American Porphyria Foundation (866-APF-3635 or general@porphyriafoundation.org) to arrange expert consultation if needed.

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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 us as needed using the enclosed link.