Resources for patients
($ = indicates available for purchase)
Support and Advocacy Groups
- Organic Acidemia Association: OAA is a non-profit volunteer run organization dedicated to support, education and advocacy for persons with PROP and other organic acidemias. Offers online resources for families and professionals, newsletters, research study announcements, and an biennual educational symposium often in conjunction with the Fatty acid oxidation support group. OAA has a board of directors and medical advisory board. Past newsletters are available and indexed by topic.
- Propionic Acidemia Foundation: PAF is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals. Offers online resources for persons with PROP, their families and health care professionals, newsletters, and research study announcements. PAF has a board of directors and medical advisory board. Past newsletters are available and indexed by topic.
- CLIMB (Children Living with Inherited Metabolic Disorders): the United Kingdom's provider of free metabolic disease information to young people, adults, families, professionals and other interested groups. Their mission is to provide Metabolic Disease specific information, advice and support to children, young people, adults, families and professionals in the United Kingdom and to provide information and support to families worldwide, to fund educational and primary research programs and to investigate treatments and medical services.
- Social Media: Propionic acidemia on Facebook, Instagram, Twitter, etc
What is Propionic Acidemia?
- STAR-G Genetic Fact Sheets for Propionic Acidemia (updated July 11, 2016) in English and Spanish, concise, but accurate fact sheets that are in a downloadable format.
- Genetic Home References: (PROP website reviewed July 2007 published Jan 24 2017) provides a brief overview of this disorder and genetic inheritance, with a comprehensive list of links to many other resources in English
- A Guide for the Family of a Child with Propionic Acidemia (2009): a guide in English or Spanish, providing a clear definition of the disorder and treatment, appropriate for the family with a newly diagnosed infant on nutrition therapy. Available to health care professionals for families from Abbott Nutrition, a division of Abbott Laboratories, Inc., PO Box 1317, Columbus, OH 43216, 1-800-986-8755 FREE.
- Parents’ Guide to PA (June 2005): a printer-friendly booklet on PROP in English, available as a PDF for downloading, prepared by the California Department of Health Services Newborn Screening Program.
Low protein cooking and Food protein tracking
- Apples to Zucchini: A Collection of Favorite Low Protein Recipes (2005) by Virginia Schuett and Dorothy Corry: This book includes more than 500 recipes for low-protein diets, with special emphasis on fresh fruits and vegetables and recipes suitable for the entire family. Very few recipes include special low-protein ingredients. The focus is on a diversity of healthy foods and easily obtainable ingredients. Protein content is listed for each recipe. $
- Food list for Propionic Acidemia (2008) This booklet in English lists VAL, ILE, MET, THR, PRO, carbohydrate and calorie content of portions of common foods by weight and household measurements. Includes management tips for persons following the PROP diet. Available free of charge upon request from Abbott Nutrition, a division of Abbott Laboratories, Inc., PO Box 1317, Columbus, OH 43216, 1-800-986-8755 FREE.
- Bowes and Church’s Food Values of Portions Commonly Used, Nineteenth Edition (2010): This book lists more than 6,300 common foods with their protein, calorie and nutrient content, organized by food groups. Order online or at your local bookseller $
- Online smartphone Websites and Apps of Low protein recipes and to track Protein and Calorie content in foods.