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CheckRare Learning Center

CheckRare Learning Center

Richard Poulin, father of a young girl with aromatic L-amino acid decarboxylase (AADC) deficiency, discusses his daughter’s positive experience with an investigational gene therapy. AADC deficiency is a rare genetic disorder that affects the nervous and...
Clinical Trials

Clinical Trials

During a AADC Family Network parent workshop, Richard presented his experience with finding, enrolling, and completing a clinical trial. Also, the results of the clinical trial were shared and how parents can learn more about future clinical trials. The AADC Family...
International Epilepsy Congress

International Epilepsy Congress

Richard Poulin held a presentation describing his experience as a parent of a child who was misdiagnosed with epilepsy and the consequences of it. He also shared his insight on how physicians could have better diagnosed the case better and symptoms to be aware of. It...
Genetic Testing

Genetic Testing

Next Steps When Genetic Testing Doesn’t Give You Answers is part of multiple discussions in the Child Neurology Foundation’s ongoing series that brings together caregivers and health professionals to provide expert advice to the child neurology community. In the...