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PAF Newsletters

Spring 2013	Fall 2012
Spring 2012	Fall 2011	Spring 2011	Autumn 2010
March 2010	Fall 2009	Spring 2009	Fall 2008
Spring 2008	Fall 2007	April 2007	August 2006

Patient Education and Support

• Propionic Acidemia Care Notebook - English PDF
• Propionic Acidemia Care Notebook - Spanish PDF
• Build Your Own Care Notebook - American Academy of Pediatrics
• Parents' Guide to PA, California Department of Health Services
• Propionic Acidemia Foundation Brochure - English PDF
• Propionic Acidemia Foundation Brochure - Spanish PDF
• Glossary of Commonly Used Terms
• National Human Genome Research Institute - Talking Glossary of Genetic Terms
• Speak Up: Prevent Errors in your Child's Care - Joint Commission
• TIPS from Parents and Caregivers  - NEW

• Ask me 3 - recommendations for when you visit your doctor
• Bereavement Support
• Family Medical Leave Act
• Health Insurance Info.Net
• NICHCY- National Dissemination Center for Children with Disabilities.
• Support Groups
• Transportation and Lodging
• Welcome to Holland by Emily Perl Kingsley

Resource Guides (United States)

• Centers for Medicare & Medicaid Services (Medicaid Waiver and Demostrations List)
• Protected Tomorrows
• NICHCY - State Organization Search

U.S. Newborn Screening Collaboratives

• National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups
• Region 1: The New England Genetics Collaborative
• Region 2: New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC)
• Region 3: Southeastern Regional Genetics Group, Inc. (SERGG)
• Region 4 Genetics Collaborative Family Resources Page
• Region 5: Heartland Regional Genetics & Newborn Screening Collaborative
• Region 6: The Mountain States Genetics Foundation
• Region 7: Western States Genetic Services Collaboratiive

Medical Publications:

Diagnosis

• American College of Medical Genetics ACT Sheet
• Comprehensive Newborn Screening
• Newborn Screening ACT Sheet
• Prenatal Diagnosis of Propionic Acidemia
• Save Babies Through Screening, Inc.

Medical

• PA Current Research List
• Acute Illness Guidelines - Nutricia
• Brain
• Clinical Testing
• Emergency Room Sample Letter
• Genetics 101
• Heart
• Hyperammonemia
• Liver Transplant
• Medications
• Molecular Biology/Biochemistry
• Neutropenia
• Pancreatitis
• Published Articles on Propionic Acidemia                    

Treatment/Nutrition    

• Recommended Nutrient Intakes- Nutricia Metabolic Partners
• Supplements (Amino acids and l-carnitine)   
• Low Protein Foods
• Measuring Formula
• Metabolic Formulas
• Nourish Nutrition Support Program - Tube Feeding Videos
• Ordering a Gram Scale
• Financial Assistance

Therapy

• Feeding Assessment
• Therapy and Communication

Research

• The importance of research   
• Knockout Mouse Production

Current Research on Organic Acidemias Addendum

Propionic Acidemia Foundation

1963 McCraren Road

Highland Park, IL  60035

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

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