Organisation im Fokus: Die Propionazidämie-Stiftung
PAF Mission Statement
Die Propionic Acidemia Foundation ist eine gemeinnützige Organisation gemäß 501(c)3, die sich der Suche nach verbesserten Behandlungsmethoden und einer Heilung für Propionazidurie widmet, indem sie Forschungsarbeiten finanziert und Familien sowie medizinischem Fachpersonal Informationen und Unterstützung bereitstellt.
PAF Vision
The PA Foundation’s vision is to create a future where Propionic Acidemia can be prevented and any affected individual can be cured and live a productive life.
Importance of Diet and Nutrition for People with PA
The PA Foundation offers nutrition resources and information for individuals with propionic acidemia, including guidelines, toolkits, medical formulas, supplements, and medical foods.
Low Protein Diet
One of the most common treatments for Propionic Acidemia is the restriction of natural protein or whole intact protein in foods and formulas. The specifics of the diet are followed by a dietitian or medical provider and are monitored with growth, development, and labs.
Formula Supplementation
Frequently, not enough protein is taken in through the diet because of protein restriction for growth and development, so formulas are used to increase the amount of protein in the diet. This is done through formulas that do not have or have very little valine, isoleucine, threonine, and methionine. The amount in the diet changes with growth, development, labs, and other factors.
There are a number of formulas that are available to drink or go through a feeding tube. In the United States, the formulas can often be obtained from a durable equipment supply company, state programs, and sometimes pharmacies.
Some of the formulas available are:
For more nutrition information, click here
Contact Information
THE PA FOUNDATION
PO Box 151
Deerfield, IL 60015-4421
Phone number: 1-877-720-2192
Email: paf@pafoundation.com
