A network dedicated to advancing research and treatment of TRND

The TRND Network is a global collaborative initiative dedicated to accelerating research and treatment for TCF7L2-Related Neurodevelopmental Disorder (TRND) to help improve the life quality and developmental milestones of children with this genetic condition. We work to achieve this by facilitating collaboration among the global research community, mobilizing resources, strategically investing in high-impact research, and supporting patients and their loved ones.

Our Vision

Our vision is to increase the understanding of TRND and provide support throughout the lifespan of patients with TRND.

Our Mission

The TRND Network is dedicated to supporting patients and their loved ones by providing advocacy and support, advancing research, and creating collaboration between researchers and patients.

Our Focus

• Understand the natural history of TCF7L2 by researching the characteristics of kids and adults with the mutation
• Engage the medical community around TRND
• Utilize cellular assays and model systems to identify drugs that can up-regulate functional TCF7L2

The TRND network was founded in 2022 by Dr. David Fajgenbaum with the purpose of supporting patients and their loved ones by providing advocacy and support, advancing research, and creating collaboration between researchers and patients.

The aim of the TRND Network is to accelerate research by leveraging and integrating the entire community of stakeholders – patients, loved ones, physicians, and researchers.

We are just at the beginning

With the help of patients, loved ones, physicians, researchers, and volunteers, we hope to advance our understanding of TRND. There is still much to learn about the disorder, and we hope that by working together, we can take steps to better understand the progression of the disorder and find potential therapies.

Patients have the opportunity to help advance research by contributing their anonymous medical data, samples, and perspectives. The TRND Network is working closely with Simon Searchlight, an organization that has created a resource network and database for rare neurodevelopmental disorders. By putting patient information together from all around the world, we hope that we can start to gain a clearer picture of TCF7L2.

We need your help

Whether you are a physician, researcher, patient, or loved one, there is much you can do to help us understand TRND. Please consider joining our movement. If you’re a physician/researcher, please reach out to us so we can collaborate and gather more data about your patients with TRND. If you are a patient/loved one, please consider signing up for the Simons Searchlight registry, where you can donate your anonymous medical information and biosamples. Together, let’s create a world where TRND patients and loved ones have the information, support, and resources they need for the journey ahead. Use the following link to join us! Please sign up here!

The TRND Network seeks to accelerate TRND research by leveraging and integrating the entire community of stakeholders – patients, loved ones, physicians, and researchers.

Working Together to Discover More

Patients and loved ones are empowered to contribute to our research by providing their biospecimens and clinical data for studies. The TRND Network works closely with Simon Searchlight, a research program that works to create a global database and resource network for rare genetic neurodevelopmental disorders. Patients, physicians, and researchers can all anonymously contribute medical data and biosamples in order to create a central location for TRND data. Using the information uploaded to our TCF7L2 Simons Searchlight registry, researchers can access a central repository to further our understanding of TRND.

Physicians, researchers, patients, and loved ones each contribute key perspectives and skills to the table. By working together, the group poses unique questions that set the research strategy of the organization. Integrating the input and ideas of each of these groups allows collaboration to prioritize the most clinically meaningful questions and research approaches to answering them.

Sharing the Knowledge

The TRND Network recognizes that there are not many existing resources for patients and loved ones about TCF7L2. In order for the broader TRND community to benefit from our findings, we plan to promptly publish results of research studies and continue to inform the community about our work. Join our Facebook group if you would like to be kept in the loop about the latest news/findings about TRND.