Announcements

New publication in JIMD Reports

High prevalence of self‐reported autism spectrum disorder in the Propionic Acidemia Registry

Newsletter Updates

Fall newsletter is available.

Spring stories/articles due February 15th, 2020.  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

This grant cycle is closed.  Grant Awards will be announced in January 2020.  Next round of grant applications is due October 1, 2020 – For questions, contact [email protected]

PROP Nutrition Guidelines and Toolkit are now available.   NMG PROP announcement Final

PROP Nutrition Guidelines and Toolkit 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).

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 www.paregistry.org

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.