Hope Through Science: Why Clinical Research Matters for HADDS

Written by Ramiro Ribeiro, MD, PhD

August 8, 2025

I’m a physician-scientist and the parent of a child diagnosed with HADDS. I want to share a message of hope rooted in what I know best: clinical research. 

To the HADDS and 10q26 related syndrome community —

I’m a physician-scientist and the parent of a child diagnosed with HADDS, I want to share a message of hope rooted in what I know best: clinical research.

HADDS is still a relatively new diagnosis in the medical world. Like many rare diseases, it comes with more questions than answers—about development, treatment, and long-term outcomes. As parents, that uncertainty can be overwhelming. But as someone who has spent my career in drug development, I can tell you with confidence: this is where clinical research can change everything.

Active research is happening for HADDS

Even in rare conditions with small patient populations, research has the power to illuminate the unknown. It starts with natural history studies that help define what the disease looks like over time. It grows through patient registries, collaborative networks, and families willing to share their stories and data. And eventually, it leads to clinical trials—designed to test potential therapies, track progress, and bring meaningful change.

While the path may be long, it is not impossible. We are living in a time of extraordinary innovation: gene therapies, precision medicine, and smarter trial designs are turning hope into reality for rare diseases once thought untreatable.

The more we come together—as families, researchers, clinicians, and advocates—the faster we move. Every parent who joins a registry, every physician who publishes a case, every researcher who asks new questions brings us one step closer to answers for HADDS.

Clinical research is not just a scientific process—it’s a lifeline. And for our children, it’s one of the most powerful ways we can build a better future.

With determination and hope,

Ramiro Ribeiro, father of Lucas Ribeiro

A note from the EBF3 HADDS Foundation:

Thank you, Ramiro, for sharing your insight with the EBF3 HADDS and 10q26 deletion community! Did you know that there are active research studies underway for EBF3 HADDS and 10q26 related syndromes? We encourage you to play an important role in advancing the understanding of HADDS and 10q26 related syndromes by participating in active clinical research studies led by Dr. Chao’s team based out of Texas Children's Hospital in Houston, Texas.

Every participant adds valuable insight—helping researchers uncover more about HADDS and 10q26 related syndromes. Outcomes from research lead to more information and resources to support those in our community. You do not have to be located in Houston or the United States to participate. Additional information is included on the flyers below. For any additional questions or to register as a participant, email Dr. Chao’s team directly at Chao-Lab@bcm.edu.