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.

Grant Applications 

Due October 1, 2018

PAF Warrior Wisdom Conference

October 19-21st, 2018 in Dublin Ohio – see conference tab for more information.   Please join us!!!

Warm Wishes Lead to a Partnership – great article about the Birthday and Holiday Card Club

Fall Newsletter Articles due August 1, 2018.

Please email to [email protected]     Please contact PAF if you would like to receive the newsletter electronically or update your contact information.

PAF participates in a Panel for Evening with Genetics

Evening with Genetics – “Partners in Progress: Parents and Scientists Catalyze Research in Rare Disease”  November 15th – Houston, Texas – Evening with Genetics 11-15-17

PAF Awards a $43,645 Research Grant to Dr. Hilary Vernon

McKusick-Nathans Institute of Genetic Medicine, John Hopkins University,  Maryland (see research page for more information)

PAF Awards a $50,000 Research Grant to Dr. Nicola Brunetti-Pierri

Fondazione Telethon, Italy (see research page for more information)


PAF Attends 16th Abbott Nutrition Metabolic Conference

Summary of the conference.

PROP Nutrition Guidelines are now available.   NMG PROP announcement Final

PROP Nutrition Guidelines are now available online.  The Nutrition Management Guideline for individuals with propionic acidemia (PROP) is part of a larger project undertaken by the Southeast Regional Newborn Screening and Genetics Collaborative (SERC) (HRSA Region 3) and Genetic Metabolic Dietitians International (GMDI) to develop nutrition management guidelines for inherited metabolic disorders (IMD).

Fall 2017 Newsletter

The Fall 2017 Newsletter articles are due by August 15th.     Please update your contact information by filling out the registration form.   PAF is also updating our medical providers list.  If your provider would like to receive the newsletter, please email us at [email protected]

PA International Registry

The PA International 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

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. 

Deerfield HS Chest 2016 Raises $168,332.35 for PAF

Last September, PAF learned the amazing news that our organization was chosen as the beneficiary of Deerfield High School’s yearly School Chest fundraising campaign! This is a humbling honor, especially knowing the many incredible and worthy charities that were considered this year!

We know that part of the reason why PAF was chosen is because of Jordan’s connection to DHS. To honor Jordan and other children who have Propionic Acidemia, the students, faculty and community of DHS are dedicated to spreading awareness and raising money for PA.