New publication in JIMD Reports
Maria L. Cotrina, Sindy Ferreiras, Patricia Schneider
First published: 10 December 2019
Thank you to all of the families that have participated in the PA Registry. For more information on the PA Registry and how to participate go to paregistry.org
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.
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.