TGen's Center for Rare Childhood Disorders

12/20/2025

1️⃣ 2️⃣ Finding Answers in the Gray Areas of Genetic Testing

When a child shows signs of developmental delay, obtaining a clear diagnosis turns challenging when standard genetic testing returns mixed results. At #12, a study led by Vinodh Narayanan, M.D., medical director of TGen's Center for Rare Childhood Disorders, suggests epigenetic testing as a powerful diagnostic tool that provides more definitive answers by allowing clinicians to move from uncertainty toward action.

🔗 to the journal: https://bit.ly/4piFNoN

10/03/2025

Runway for Research is less than two weeks away, and there is still time to reserve your seat 🩷 More information about the event, tickets and sponsorship opportunities at TGen.org/runway

06/16/2025

The C4RCD Pizza Pool Party was a huge success! Thank you to all of the families that came out and celebrated with us. Thank you, Ability360 Sports & Fitness Center, for providing the perfect space to hold an event!

06/10/2025

TGen's Center for Rare Childhood Disorders (C4RCD) hopes you can join us at Ability360 for a Pizza Pool Party on June 14th (9am-1pm).

06/04/2025

Children with rare diseases often undergo what is known as a “diagnostic odyssey,” bouncing between doctors and specialists for years.

Why? Because the symptoms often overlap with those of far more common childhood illnesses.

Read more about different examples and how to advocate for your loved one:
https://bit.ly/4iI3zX8

05/07/2025

Navigating the maze of a child's illness without answers is heartbreaking.

Read more about the "overlap dilemma," explaining why rare diseases are so often misdiagnosed, leading to years of uncertainty for families. Learn about the challenges and, more importantly, how to advocate for your child when the path to diagnosis feels unclear. Read more to feel empowered and informed.

https://bit.ly/3YQgGOz

04/22/2025

04/22/2025

Are you interested in participating in biomarker research? COMBINEDBrain is a non-profit consortium of over 80 patient advocacy groups for rare, neurodevelopmental disorders. They are on a mission to collect ~500 samples from their member organizations. They will be in Phoenix, AZ on June 27-28th. If you are interested in learning more about their organization and their repository, please visit https://combinedbrain.org/.

The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurological disorders by pooling efforts, studies, and data.

04/14/2025

TGen's Center for Rare Childhood Disorders (C4RCD) hopes you can join us at Ability360 for a Pizza Pool Party on June 14th (9am-1pm). All are invited!

https://docs.google.com/forms/d/e/1FAIpQLSfOItFYcGTNe-YLFDzqvn0KGl2LcLTdCWS-C1WDdOpmY8YpFQ/viewform?usp=sharing

04/08/2025

Artificial Intelligence can help transform the future of diagnosing rare diseases through:
📈 Accelerating the Diagnostic Process
👆 Enhancing Accurate Through Data Insights
🤝 Improving Access to Expert Care

The potential for positive impact and improvement is limitless.

Click the link to our most recent article on Harnessing the Power of AI in Diagnosing Rare Childhood Conditions. https://bit.ly/4jtUUZd

03/14/2025

We join in celebrating the contributions of the entire medical team to better and ! Week, March 18-22, 2025

03/06/2025

When your child is sick, you hope for clear answers. But what if there aren’t any? The uncertainty, fear, and frustration can feel overwhelming. 💙

No parent is ever truly prepared for the weight of medical uncertainty, but you are not alone. There are ways to navigate this journey—with resilience, support, and hope. At TGen's Center for Rare Childhood Disorders, we’re committed to bridging the gap between cutting-edge genomic discoveries and personalized care.

🔗 Read the full blog at: https://www.tgen.org/patients/center-for-rare-childhood-disorders/stories/when-doctors-don-t-have-answers-coping-with-uncertainty-in-pediatric-care/