TGen's Center for Rare Childhood Disorders

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/

02/28/2025

Happy from the team at TGen's Center for Rare Childhood Disorders! We’re proud to show up for the 1 in 10 people in our community who live with rare diseases and disabilities. and get involved with us today: rarediseaseday.us

02/24/2025

Rare genetic disorders, once difficult to diagnose, have seen significant advancements through genomics, enabling precise diagnoses and the development of targeted therapies.

In the College of Health Solutions' February Health Talks webinar, "Rare Genetic Disorders: Targeted Support from Diagnosis to Therapy," our health experts will provide an overview of the prevalence of rare genetic disorders and the current diagnostic approaches, while also examining the broader implications for treatment and patient care.

Speakers:

Dr. Vinodh Narayanan (Narayanan, Vinodh)
Medical director, Center for Rare Childhood Disorders
Translational Genomics Research Institute

Keri Ramsey
Clinical co-director, Center for Rare Childhood Disorders
Translational Genomics Research Institute

Katherine Hunt Brendish, moderator
Clinical professor and genetic counseling program director
ASU College of Health Solutions

Rare genetic disorders, once difficult to diagnose, have seen significant advancements through genomics, enabling precise diagnoses and the development of ta...