Porphyria Post

  • Tuesday, October 8, 2019

Dear APF Member,

The American Porphyria Foundation has worked tirelessly for nearly forty years to increase awareness, educate physicians, drive research, support patient programs, and advocate on behalf of our members.  None of this could be accomplished without your valuable support of time, talent, and treasure. Your continued support has sustained the mission of the APF.

We won’t stop…and we hope you won’t either! 

Please consider a donation to the American Porphyria Foundation.

We have accomplished so much yet there is so much more to do for each type of Porphyria.

The APF…

  • Manages thousands of calls every year from patients and physicians
  • Sends hundreds of Physician Education Packets and Patient Education Kits each year
  • Hosted over a dozen patient education meetings across the country last year
  • Collaborates daily with our Scientific Advisory Board and the experts of the Porphyrias Consortium
  • Connects patients with knowledgeable physicians across the US and internationally
  • Educates members on clinical trials and research studies
  • Advocates on behalf of members with national rare disease groups, at medical conferences, with legislators, and government organizations
  • Maintains a strong social media presence
  • Gains media attention
  • Supports patients with disability issues, reimbursement, access to treatment, pain management, diagnosis, informational materials….
  • … and sometimes we simply hold a hand or share a friendly voice in a time of need.

The suggested annual donation is $35.00. 

We welcome any donation, though please remember that membership is complimentary. 

Together, we can continue to be a force for improved porphyria healthcare and research.

With heartfelt thanks for your ongoing and terrific support!

Click HERE to donate!

Kristen Wheeden
Executive Director

Desiree Lyon
Global Director

The APF is a 501(c)3 non-profit foundation dedicated to improving the health and well-being of all individuals and families impacted by Porphyria. All donations are tax-deductible.