DDC Clinic Helping Shape the Future of Byler Disease Research Through National Consortium Leadership

June 9, 2026

DDC Clinic for Special Needs Children is helping shape the future of how Progressive Familial Intrahepatic Cholestasis (PFIC), also known as Byler disease, is researched, understood, and treated.

Medical Director, Dr. Heng Wang, has been selected to serve on the Steering Committee of the Patient-Centered PFIC Research Consortium, a national initiative dedicated to advancing research and improving outcomes for individuals and families affected by PFIC.

PFIC is a group of rare genetic liver disorders that can lead to severe liver disease and other serious health complications. The Patient-Centered PFIC Research Consortium brings together clinicians, researchers, patients, caregivers, and advocacy leaders to establish a collaborative framework for future research, governance, and patient-centered comparative effectiveness studies.

Dr. Wang’s selection reflects DDC Clinic’s longstanding expertise in rare genetic disorders and its commitment to advancing research that directly benefits patients and families. Over the next two years, steering committee members will help develop the consortium’s governance structure, establish research priorities, and prepare future funding proposals aimed at improving care and outcomes for PFIC patients worldwide.

As part of this work, Dr. Wang will participate in steering committee meetings, training sessions, and collaborative planning efforts, including the PFIC Family & Scientific Conference in Chicago this July. The consortium’s efforts are expected to create a new infrastructure for patient-centered PFIC research and serve as a model for other rare disease communities.

“Research collaboration is essential to advancing care for patients with rare genetic disorders,” said Dr. Wang. “I am honored to contribute to this effort and to represent DDC Clinic as we work alongside families, researchers, and healthcare professionals to improve understanding and treatment of PFIC.”

For more than two decades, DDC Clinic has been recognized for its leadership in rare disease care, genetic testing, and scientific discovery. Dr. Wang’s appointment further strengthens the clinic’s role in helping shape the future of rare disease research while ensuring patient and family perspectives remain central to scientific progress.