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Propionic Acidemia Foundation

The Propionic Acidemia Foundation is a non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.  Join Us in our vision to create a future where Propionic Acidemia can be prevented and any affected individual can be cured and live a productive life.

News and Announcements

2014 Annual Appeal - Check it out!  Every dollar helps!!! Thanks to your generosity, we have allready received $11,568 in donations.

Fall 2014 Newsletter is now available on-line!  Please submit stories by 2/15/2015 for the Spring newsletter.

Research grant proposals were received by the October 1st deadline.  Announcements on grant awards will be in January, 2015.  

Board Leadership Volunteers:   Looking for interested individuals to take on leadership roles within PAF. Please email outreach@pafoundation.com if you would like to become more involved.   Elections for 2015 will be in December.

The PA 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

Dr. Loren Pena's study titled: "A prospective study of biochemical parameters reflective of metabolic control in propionic acidemia" is still recruiting.    Click here for more information on the study and how to participate.  

The NIH MINI Study: Metabolism Infection and Immunity in Inborn Errors of Metabolism (www.genome.gov/mini) is an exciting new study at the NIH Clinical Center (clinicalcenter.nih.gov). The main goal of the study is to learn about the function of the immune system in metabolic disorders, especially OAs.  (click title for more information)  Flu Season is here:  Download this pdf on Flu and Inborn Errors of Metabolism

2013 PAF Education Conference Presentations are available.

New Article: Mol Ther. 2013 May 7. doi: 10.1038/mt.2013.68. [Epub ahead of print] Generation of a Hypomorphic Model of Propionic Acidemia Amenable to Gene Therapy Testing.  Guenzel AJ, Hofherr SE, Hillestad M, Barry M, Weaver E, Venezia S, Kraus JP, Matern D, Barry MA.

Past Newsletters are available on the Sites of Interest Page.  Please submit stories by February 15th for the Spring 2015 Newsletter to paf@pafoundation.com.  If your contact information has changed, please update at http://pafoundation.com/join.htm 

PA Consensus Meeting Publishes 5 articles on PAClick this link. 

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 paf@pafoundation.com .  Check out events to follow our progress. 

August 2010 PAF Education Conference now available  This is a great resource for anyone interested in learning more about Propionic Acidemia.   More information on this project can be found on Page 7 of the Spring 2011 Newsletter.

Propionic Acidemia Foundation  Conference Player

Click to view!!!


Your contribution is tax-deductible.   Check donations may be made to PAF by printing our donation form.

Download the PAF Brochure.

                                         

                                               

 

 

Propionic Acidemia Foundation

1963 McCraren Rd.

Highland Park, IL 60035

paf@pafoundation.com

U.S. Toll Free 1-877-720-2192

  The Propionic Acidemia Foundation is a non-profit 501(c)3 organization.

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