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Support & Assistance

The American Porphyria Foundation provides many support and assistance programs for our members. These valuable resources are intended to guide patients and families that are impacted by Porphyria.  Have an idea? Please contact the APF if you have an idea as to how we can better support you.

We hope you use the following resources:

  • Download the Rare Disease Toolkit to manage your interactions with healthcare professionals.
  • Attend or host a Patient Education Meetings, which is a valuable way to connect with other patients and to learn from a porphyria expert.
  • Request a Patient Education packets that includes the most recent printed content on all the Porphyrias. 
  • We will send a comprehensive Physician Education Packet to any physician to inform on the diagnosis, treatment, and management of the Porphyrias.
  • Join the Caregiver Support Forum if you are a caregiver helping a porphyria patient with activities of daily living.

 

Above all, know that you are not alone.  The APF is here for you!