Announcements

PAF COVID-19 info

PAF Awards $30,591  Continuation Grant in 2020

Eva Richard, PhD, Universidad Autonoma de Madrid, Spain

“Cardiomyocytes derived from induced pluripotent stem cells as a new model for therapy development in propionic acidemia”

 

2020 PA FAMILY DAY (postponed due to Covid-19)

Joint PAF and CHC Event

April 18, 2020 9am-2pm

Siloam Fellowship
61616 County Road 35
Goshen, IN 46528

New publication in JIMD Reports

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

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

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

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.