We are excited to share a major milestone in the Myhre Syndrome Foundation’s efforts to expand access to expert, multidisciplinary care for individuals living with Myhre syndrome. In 2025, we are proud to continue our long-standing support of Dr. Angela Lin and her team at Massachusetts General Hospital, and to announce the launch of two newly funded clinical sites: one at Stanford Medicine Children’s Health and the other at Texas Children’s Hospital.
Continuing Support for Massachusetts General Hospital
For many years, the Myhre Syndrome Clinic at MGH has been a leader, offering coordinated, multidisciplinary care. Under the guidance of Dr. Lin, this clinic has provided diagnostic clarity, long-term care planning, and a space where families can feel seen, heard, and supported. The MGH team has also published essential research leading to the emergence of a natural history of Myhre syndrome, contributing to how clinicians worldwide understand and manage the condition. We are proud to continue supporting this incredible work.
New Support for Texas Children’s Hospital
At Texas Children’s Hospital, the new Myhre clinic will operate within the Cardiovascular Genetics Program—one of the largest and most comprehensive in the country. Our funding will support a clinic coordinator who will ensure patients with Myhre syndrome have organized itineraries, and support before, during, and after clinic visits. The clinic will offer access to specialists in gastroenterology, ENT, pulmonology, physical therapy and psychiatry. This coordinator will also help with research enrollment, resource sharing, and provider education.
The TCH team brings an outstanding track record in rare disease care and advocacy and is committed to building a lasting program that evolves alongside the needs of our community.
New Funding for Stanford’s Myhre CARE Initiative
At Stanford Medicine Children’s Health, the Cardiovascular Connective Tissue Disorders Clinic is launching a new program focused specifically on Myhre syndrome: the Myhre CARE Initiative (Community, Awareness, Research, and Education). This clinic brings together a remarkable team of specialists across cardiology, genetics, psychiatry, neuropsychology, gastroenterology, ENT, pulmonology, physical therapy, and more—all coordinated to offer same-day, whole-person care.
MSF’s funding will support a dedicated research assistant to collect patient-reported outcomes, build databases, and contribute to research that will improve care not just at Stanford, but across the Myhre community. The initiative also includes educational efforts for students and clinicians, toolkits for families, and a new video series to support learning and awareness.
Looking Ahead
These partnerships are just the beginning. With ongoing input from families, clinicians, and researchers, we’re building a stronger, more connected network of care for everyone living with Myhre syndrome.
We are deeply grateful to all of our donors and partners who make this work possible—and to the families who continue to guide our mission with courage, insight, and determination.