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.
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 email@example.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 firstname.lastname@example.org. If your contact information has changed, please update at http://pafoundation.com/join.htm
PA Consensus Meeting Publishes 5 articles on PA: Click 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 email@example.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.
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