Warm Wishes Lead to a Partnership – great article about the Birthday and Holiday Card Club
Spring Newsletter Articles due February 15, 2018.
Please email to [email protected] Please contact PAF if you would like to receive the newsletter electronically or update your contact information.
PAF participates in a Panel for Evening with Genetics
Evening with Genetics – “Partners in Progress: Parents and Scientists Catalyze Research in Rare Disease” November 15th – Houston, Texas – Evening with Genetics 11-15-17
Fall Newsletter is available
PAF Awards a $43,645 Research Grant to Dr. Hilary Vernon
McKusick-Nathans Institute of Genetic Medicine, John Hopkins University, Maryland (see research page for more information)
PAF Awards a $50,000 Research Grant to Dr. Nicola Brunetti-Pierri
Fondazione Telethon, Italy (see research page for more information)
Due October 1, 2018
PAF Attends 16th Abbott Nutrition Metabolic Conference
PROP Nutrition Guidelines are now available. NMG PROP announcement Final
PROP Nutrition Guidelines 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).
Fall 2017 Newsletter
The Fall 2017 Newsletter articles are due by August 15th. Please update your contact information by filling out the registration form. PAF is also updating our medical providers list. If your provider would like to receive the newsletter, please email us at [email protected]
PA International Registry
The PA International 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.
Deerfield HS Chest 2016 Raises $168,332.35 for PAF
Last September, PAF learned the amazing news that our organization was chosen as the beneficiary of Deerfield High School’s yearly School Chest fundraising campaign! This is a humbling honor, especially knowing the many incredible and worthy charities that were considered this year!
- Deerfield H.S. School Chest drive raises funds, awareness for local charity. – Steve Sadin, Deerfield Review, January 5, 2017
- School Chest Drive is personal for Deerfield High School Students – Steve Sadin, Deerfield Review, November 28, 2016