The Tatton Brown Rahman Syndrome (TBRS) Community and the Malan Syndrome Foundation are proud to announce the publication of a significant new article, “Epilepsy and Overgrowth–Intellectual Disability Syndromes: A Patient Organization Perspective on Collaborating to Accelerate Pathways to Treatment.” This publication introduces the Overgrowth Syndromes Alliance (OSA), a collective effort between the TBRS Community and Malan Syndrome Foundation, uniting patient advocacy organizations and researchers to improve care and identify treatments for rare overgrowth–intellectual disability (OGID) syndromes.
The paper underscores the importance of a patient-first approach, focusing on the needs and priorities of the OGID community. It highlights the underrecognized occurrence of seizures within these syndromes. Additionally, it provides a valuable resource for patients to discuss appropriate screening and care with their primary care providers and neurologists.
The OSA aims to accelerate research and treatment development by fostering collaboration and shared goals among overgrowth patient organizations. This paper includes the OSA research roadmap, a guide that provides the framework for therapeutic development, as well as research tools essential for clinical trial readiness.
This publication is a milestone for the OGID community, offering hope and direction for future research and therapeutic advancements.
