The first annual Neurofibromatosis Family Day Meeting took place on Nov. 12, 2022, at Dell Children’s Medical Center. Co-sponsored by the Dell Children’s Neurofibromatosis Center of Excellence, UT Health Austin Pediatric Neurosciences at Dell Children’s, and the Children’s Tumor Foundation, this daylong meeting allowed individuals with NF and their families to learn the latest developments in NF clinical care and research from the Center of Excellence team. Patients and family members attended presentations on key topics and could meet with the team during breakout sessions and meal breaks. Pediatric neuroscience presenters included Jane C. Edmond, MD, Emily Greenspahn, PhD, Manikum Moodley, MD, and Karla Robles-Lopez, MD, PhD.
The Neurofibromatosis Center of Excellence offers comprehensive diagnosis and management for children and adolescents with known or suspected NF. The team includes specialists from several disciplines, allowing us to provide the best possible medical care and psychosocial support to our patients and their families. This first Neurofibromatosis Family Day enabled individuals with NF and their families to learn more about the disorder, promoted relationship building among the families, and raised awareness for the disorder and the need for additional research funding.