Neurology Parent Professionals

Neurology Parent Professionals is a specialized consultancy and professional network focused on pediatric neurology, particularly rare genetic epilepsies such as Lennox-Gastaut syndrome and infantile spasms. Founded by Danielle Boyce, the organization serves as a bridge between patient families and the medical research community, providing patient-centric insights for clinical trial design and advocacy. The group has collaborated with pharmaceutical companies like Lundbeck and academic institutions to develop clinical tools, including the Refractory Epilepsy Screening Tool for Lennox-Gastaut Syndrome (REST-LGS). It offers resources for families navigating genetic testing and advocates for the inclusion of caregiver perspectives in drug development and healthcare policy. The organization is frequently cited as an affiliation in peer-reviewed medical literature and at major epilepsy conferences.