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Dr. Clara Tang Promoted to Chief Scientific Officer as Research Advances Toward Clinical Trials

Scientific Leadership Update. Clara Tang. Bruce Bloom.

There is no treatment that addresses the underlying cause of Kabuki syndrome. Care today focuses on managing symptoms through multiple specialists and supportive therapies. For families, that reality shapes daily life.

Our focus is on building the scientific and clinical foundation required to move beyond managing symptoms. Today, we are announcing the promotion of Dr. Clara Tang, PhD, to Chief Scientific Officer, alongside the appointment of Dr. Bruce Bloom as Chief Collaboration Officer.

Over the past three years, Clara has led the development and execution of LEAP, our Roadmap to Treatments. During her tenure, she has built a structured, treatment-focused research strategy designed to move promising therapeutic candidates toward clinical readiness.

Under her leadership, we have expanded our therapeutic portfolio, strengthened our research grant programs, and grown our collaborative network across academia and biotech. Clara has also led the establishment of the Kabuki Syndrome Outcome Measures and Biomarkers Consortium (KSOC), a multi-site consortium spanning six clinical centers across North America. KSOC is focused on developing the outcome measures and biomarkers required for future clinical trials, ensuring that when therapeutic candidates are ready, the tools to evaluate their effectiveness are in place.

As Chief Scientific Officer, Clara will continue advancing our therapeutic pipeline while strengthening the infrastructure that supports it, so the most promising candidates can move forward responsibly and efficiently.

Dr. Bruce Bloom’s appointment as Chief Collaboration Officer complements this next phase of our growth. His focus will be on expanding academic, biotech, and industry partnerships to help translate research into therapeutic development. Drug development requires coordinated collaboration across many stakeholders, and this structure is designed to support that complexity while maintaining steady progress.

This announcement comes as our research efforts continue to advance. In the year ahead, we will participate in the American College of Medical Genetics and Genomics (ACMG) Meeting, connecting with clinicians and researchers interested in Kabuki syndrome. We’ll host our second Scientific Symposium, continue recruiting for multiple research studies including Unravel, our AI-driven drug repurposing study, and enter Phase Two of KSOC.

Since its founding, the Kabuki Syndrome Foundation has grown from a parent-led organization into a professionally managed research-driven nonprofit that has contributed more than $2.8 million to research. 

“We remain focused on developing research and the infrastructure needed to deliver meaningful progress for individuals and families living with Kabuki syndrome,” said Patrick Dunbar, Executive Director of the Kabuki Syndrome Foundation. “Formalizing Clara’s role as Chief Scientific Officer, and appointing Bruce as Chief Collaboration Officer, strengthens the leadership and focus required as we continue advancing toward clinical trial readiness.”

If you would like to stay informed about our research progress, upcoming opportunities, and initiatives throughout the year, we encourage you to sign up (below) for our email newsletter.