Propionic Acidemia Foundation Logo

PROPIONIC ACIDEMIA FOUNDATION

Translation


  • ABOUT PA
    • FAQ
    • Diagnosis
    • Nutrition
    • Treatments
    • Medical Publications
    • Glossary
  • RESOURCES
    • Family Stories
    • Newsletters
    • Patient Education and Support
    • Warriors Birthday Club
    • COVID-19
  • RESEARCH
    • Research
    • Research Studies
    • Grant Application
    • Clinical Trials
    • Medical Publications
    • Biobank
    • PA Registry
  • ABOUT PAF
    • Mission
    • Board of Directors
    • Medical Advisory Board
    • Committees
    • Program Accomplishments
    • Financials
    • Contact Us
    • Contact form in Spanish
    • Medical Providers Contact Form
    • Disclaimer & Privacy Policy
  • CONFERENCES
    • 2023 July 21-22 Conference
    • 2023 March 4 Conference
    • 2022 Conference
    • 2021 Conference
    • PA Fun Time with Shayna
    • 2020 PAF Virtual Family Day
    • 2020 PA Family Day Postponed
      • Schedule
      • Register
    • 2018 Warrior Wisdom Conference
      • Agenda
      • Hotel and transportation
      • Resources
    • 2017 Warrior Wisdom Conference
      • 2017 Warrior Wisdom Conference Presentations
    • 2013 PAF Education Conference
    • 2012 PAF Education Conference 
    • 2010 PAF Education Conference
    • PA Family Days
  • NEWS
    • NEWS & EVENTS
  • SUPPORT PAF
    • Marathon 2023
    • Donate Now
    • Donate Forms
    • Become a Sponsor
    • Host a Fundraiser
    • Get Involved
    • Fundraising archives
      • Marathons and More
      • Corn Hole Tournament
      • 2016 DHS Events
  • Menu

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
  • 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
  • TIPS from Parents and Caregivers
  • Ask me 3 – recommendations for when you visit your doctor
  • Bereavement Support
  • Family Medical Leave Act
  • 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)
  • 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:

Research

  • The importance of research
  • Knockout Mouse Production

MISSION

Propionic Acidemia Foundation 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.

WEBSITE IS MAINTAINED BY PAF.

Disclaimer and Privacy Policy
© 2023 Propionic Acidemia Foundation. All rights reserved.

LOCATION AND CONTACT

PO Box 151
Deerfield, IL 60015-4421
[email protected]
U.S. Toll Free 1-877-720-2192
Propionic Acidemia Foundation is a non-profit 501(c)3 organization.