Webinars & Videos

OAA Webinars and Videos

Organic Acidemia Association

Organic Acidemia Association
We are thrilled to invite the OAA community to a special webinar featuring Dr. Chuck Venditti from the National Institutes of Health (NIH). Whether you are a patient, caregiver, or advocate, this is your opportunity to hear directly from one of the leading experts in our field about the latest scientific advancements and what they mean for the future of care. Dr. Venditti will be covering critical research updates, including: Gene Therapies for MMA & PA: Progress, milestones, and what’s on the horizon for genomic medicines. High-Dosing Hydroxocobalamin: Key insights and updates on treatment approaches for Cobalamin C patients. New Clinical Guidelines: A look at the shifting standards for diagnosing and treating cobalamin disorders. Don't miss out on this deep dive into the science moving our community forward. Submit your questions as head of time in the registration form.
NIH Research Updates with Dr. Chuck Venditti
Marshal Summar, MD Chief Executive Officer, Uncommon Cures A clinical geneticist with nearly 40 years of experience in rare disease research, Dr. Summar has been involved in more than 100 clinical trials. He was the founding Director of the Rare Disease Institute at Children’s National Hospital in Washington, DC, and also chaired the Board of the National Organization for Rare Disorders (NORD). Dr. Summar is internationally recognized as a leading authority in the field of rare disease research, and his deep insight into both patient care and clinical trial inefficiencies inspired the creation of Uncommon Cures. Kerri Gallagher, BSN, RN Vice President of Operations, Uncommon Cures Kerri Gallagher oversees all clinical activities related to study execution. She leads feasibility assessments, protocol reviews, and operational planning to ensure trials are practical, efficient, and patient-centered. She brings 10+ years of leadership experience in emergency nursing at Children’s National Hospital in Washington, DC, along with more than two years in organ transplant and procurement operations. Her background provides a strong foundation for managing complex, high-stakes clinical environments.
Rare Disease Clinical Trial Design: Start with the Patient and Use The Best Science
Come to hear updates from OAA and give feedback on future programming! We can't wait to hear from you
2026 OAA Town Hall - May 31, 2026
We’re proud to share a new chapter for the Organic Acidemia Association with the unveiling of our new logo! Inspired by the families, advocates, clinicians, and supporters at the heart of everything we do. Our mission remains the same: supporting families, raising awareness, and advocating for those affected by rare metabolic disorders. A year of possibilities. Every family matters. Every journey matters. #OrganicAcidemia #WeCareForTheRare #RareDiseaseAwareness #RareMetabolicDisorders #HealthAwareness
New Year - New OAA Logo!
GC Connexons interns share their insights of working with the OAA Registry during their 6 week internship in July/August 2025.
From Conversations to Change: OAA Internship Insights & Why Your Voice Matters in the OAA Registry
https://www.renolifebetweenlives.com/ Beth is an expert spiritual hypnotherapist, having been a Master's Prepared Psychiatric Registered Nurse for 30+ years. Spiritual hypnotherapy allows you to have a much clearer understanding of why things are the way they are in your life and create change. Your Higher Self (also called "Subconscious," "Superconscious" or "Soul") supports your life's journey, knows you and loves you. When your Higher Self is contacted during a session, observable changes happen, like a dramatic increase in the perceptible energy resulting in feeling peace and joy. This energy helps in amazing and unexpected ways. Spiritual hypnotherapy helps you achieve physical, emotional and spiritual well-being. It allows you to access part of yourself that holds all the answers. Beth's role is to facilitate that process.
View of the Afterlife
Moderna featured Ayla's story for Rare Disease Day 2024. Ayla has MMA Mut 0. (Methylmalonic Acidemia, Mut 0)
Moderna Ayla's Story MMA
Meet our newest physician at the NIH – Dr. Carolina Galarreta Aima For Spanish speaking families – please register and a Zoom link will be emailed to you!
Meet our newest physician at the NIH - Dr. Carolina Galarreta Aima - In Spanish
Join OAA to meet with leaders of flok (formerly PKU News). We'll talk about flok programs like their Family Camp, learn about the flok app, and take any questions you may have for the flok team.
Flok Presentation for OAA - March 24 2024
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