Enrolling in Clinical Trials Workshop: Empowering Families of Children with Rare Diseases
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 Network is a regular event by the ALADD Foundation. The ALADD Foundation, Inc. was established in 1998 and was the first foundation for AADC (Aromatic L Amino Acid Decarboxylase Deficiency). The foundation was established for the charitable and educational purposes of providing research, medical assistance, support, and awareness and participating in all services and activities designed to carry out and find a CURE for AADC.
The foundation funded the first mouse model to better understand the disease and find new treatments. We also funded the very first database which focused on collecting information on signs and symptoms as it relates to the severity of illness.