My name is Meadow, I am an 18-year-old from Maryland and I was diagnosed with 3MCC (3-Methylcrotonyl CoA Carboxylase Deficiency) when I was just 1 week old.
Leonardo was born on November 27, 2021. He was the second child of ours, and he was seemingly perfect. I gave birth to my first child in April of 2020 in the midst of the pandemic where he was taken
Summer 2023 OAA Newsletter The digital version of the Summer 2023 Newsletter is available now. This issue features family stories, formula and industry partner information. We hope you enjoy this update – if you are interested in sharing your story
Update on The Rapid Blood Ammonia Testing Instrument Thomas Veltman, Ph.D.President and CTOAza Technology, Inc.tv@azatechnology.com Aza Technology has made significant progress towards the commercialization of our point-of-care Ammonia Monitoring Device (AMD). In our previous update, we informed readers that we
Our Kids / Katie Glutaric Acidemia, Type 1 – Age 23 I was diagnosed with Glutaric Aciduria Type 1 when I was 6 years old. The doctors tested me for GA1 because my 15-year-old brother had just got diagnosed. Before
Our Kids / Abbott Formula Update – April 24, 2023 New Updates from Abbott on the availability of metabolic formulas. Full details at metabolicformula.org/supplier-updates.All Abbott metabolic products are now shipping. with the exception of Cyclinex®-2 and Propimex®-2 which are expected
Our Kids / Cameron, Methylmalonic Acidemia, Cbl C, Age 6 Methylmalonic Acidemia caused by Cobalamin C deficiency….Before our daughter Cameron was born we had never even heard about this organic acid disorder. From the onset this term changed our lives.
Winter 2023 OAA Newsletter The digital version of the Winter 2023 Newsletter is available now. This issue features family stories, Rare Disease Day coverage and industry partner information. View Now > Click Here For More Newsletters >
Our Kids / NIH Gene Therapy Team Reveals Its Path to FDA Orphan Drug and Rare Pediatric Disease Designations March 29, 2023 Platform Vector Gene Therapy project researchers begin to demystify the regulatory process of developing a gene therapy