On Wednesday, June 19th through Thursday June 20th, patients, families, doctors and other professionals will meet in Houston TX to discuss TANGO2 disease and how to best move forward with research around this rare and serious genetic disorder. The conference is made possible by a generous grant from the Patient-Centered Outcomes Research Institute (PCORI) awarded to grantee Dr. Seema Lalani with the support of the TANGO2 Research Foundation. We would like to express our sincere thanks to PCORI for making this grant available and for Dr. Lalani who dedicated her time and energy to securing the grant along with leading the Conference Planning Committee.
The TANGO2 Research Foundation and all of the families involved are very excited about the opportunity to gather in one place to learn more about TANGO2 and directly influence the roadmap for future research!
High Lights of the Conference Include
- Keynote Speaker – Brownie Schott
- Summary of the Natural History Study Currently Underway – Drs. Lalani and Miyake
- What is Patient Centered Outcomes Research – Denese Neu
- The Genetics of TANGO2 – Drs. Lalani and Craigen
- Cell Physiology Consequences of TANGO2 Deficiency – Dr. Distelmaier (video from Germany)
- Workshop – Facilitating Opportunities for Patient-Centered Outcomes Research/Clinical Comparative Effectiveness Research for Children with TANGO2 Disorder
- Keeping Up With the Metabolic Demands in Children with TANGO2 Crises – Dr. Soler
- TANGO2 Research Foundation Overview - Mike & Kasha Morris
- Heart and TANGO2-Challenges in Treating Arrhythmias to Save Lives – Dr. Miyake
- Mouse Model Research Findings – Dr. Burrage