News and Events


Abbott Nutrition Formula Update:  Metabolics Update 4.24.23 Patients

New and Upcoming Events

June 30, 2023 Panda Express Fundraiser

Saturday, July 22, 2023  – PA Education Conference – “Heart to Heart” – registration is open

November 2023 – NY Marathon PA Runners will be running to raise money for PAF

Newsletter Updates

Fall stories/articles due August 15th, 2023.  Please email to [email protected]     Please register  with PAF if you would like to receive the newsletter by mail or email or update your contact information.

Grant Applications

Due October 1, 2023 – For questions, contact [email protected]

PA International Patient Registry

The PA International Patient Registry provides a way for PA patients and families worldwide to improve the understanding of the disorders and accelerate research by reporting information about how the disorder affects them.  The Registry is itself an IRB-approved research project and the data collected will help characterize the condition of people living with PA. You can find out more on

PARunners Pounding the Pavement for PA

Join the PAF Pounding the Pavement for PA team or start your own!  Run in any race, around your block, or become a “virtual runner” Contact Brittany Smith for more information at [email protected] .  Check out events to follow our progress. 

Privacy Policy

The PAF Privacy Policy has been updated to include EU. The link to the Privacy Policy can be found at the bottom of every webpage.


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