History of COMBINEDBrain
Terry Jo Bichell worked primarily as a public health nurse-midwife until her youngest child, Lou, was diagnosed with Angelman syndrome in 2000. She quickly shifted her focus to advancing research, helping move bench science into early clinical trials and contributing to the design of natural history studies. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s disease rodent models. She went on to serve as founding director of the A-BOM Alliance from 2016–2018, advancing outcome measures and biomarker development in rare diseases.
Building on this work, she launched COMBINEDBrain as a pre-competitive consortium of patient advocacy organizations focused on identifying shared outcome measures and biomarkers for rare genetic neurodevelopmental disorders. What began with twenty groups has grown to over 130 patient advocacy organizations in just seven years. Today, COMBINEDBrain continues to expand this model by integrating data, biospecimens, and cross-sector collaboration to accelerate therapeutic development across rare neurological disorders.
Patient-Led Collaboration
COMBINEDBrain is unique in that it is led by patient advocacy organizations. Member organizations work together to identify shared scientific priorities, support collaborative research initiatives, and contribute to the development and use of shared research infrastructure, including data platforms, biospecimen resources, and cross-disease research programs.
This model allows rare disease communities to participate in larger scientific efforts while maintaining the independence and mission of each individual organization.
Governance
The consortium is overseen by a Governing Board composed primarily of leaders from member patient advocacy organizations, with additional guidance provided by scientific and clinical advisors. This structure ensures that research priorities remain aligned with patient needs while incorporating scientific, clinical, and industry perspectives.
Collaboration
COMBINEDBrain works closely with clinicians, academic researchers, and industry partners involved in the development of therapies for rare neurological disorders. These collaborations enable cross-disease research initiatives, shared data analysis, and coordinated study design across sectors—accelerating understanding of disease biology and advancing therapeutic development.
Our Community
COMBINEDBrain currently includes over 130 rare neurological disorder communities, working together to accelerate research and treatment development.
Membership
COMBINEDBrain is composed of patient advocacy organizations representing rare neurodevelopmental disorders. Member organizations collaborate through the consortium to support shared research programs, contribute data and biospecimens, and participate in cross-disease initiatives.
Membership provides access to a broader network of collaborators, datasets, and research opportunities, while enabling organizations to contribute to a shared research ecosystem.
Meet the Team
Patient | Scientific | Clinical | Industry |
