News and Events

News

New and Upcoming Events

IMPORTANT:   Update 10/3/24

Letter from Mead Johnson Metabolics Supply Patient Association Letter Communication 2nd OCT 2024 FINAL (1)

Letter from Mead Johnson Metabolics Supply Patient Association Letter Communication   

 

October 19, 2024 – PAF and the Community Health Clinic will be co-hosting PA Hope for the Heartland Family Education Conference in Shipshewana, IN.  Registration is open: 2024 October 19 Conference – Propionic Acidemia Foundation (pafoundation.com) Limited space.  Conference is expected to fill up.

November 2024 – NY Marathon PA Runners will be running to raise money for PAF.

Newsletter Updates

Fall Newsletter is now available.  Spring stories/articles due March 1st, 2025.  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

In Spring 2024, PAF awarded a $50,000 Initial Research Grant for 4/1/24-3/31/25.

Grant Mitchell, MD, CHU Saint-Justine, Montreal, Canada

“New approaches to understanding and treating propionic acidemia.”

Due October 1, 2024 – 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 www.paregistry.org

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.