Effective Date: 2/20/2025

The KMT2C Foundation does not accept, review, retain, interpret, or provide opinions regarding private medical records, genetic testing reports, diagnostic reports, laboratory results, imaging, or other individual medical documentation.

Please do not send medical records or other protected health information to the Foundation, its staff, volunteers, or Board members.

Any medical records or diagnostic documents that are sent to the Foundation by a parent or associated member are deleted from our email servers and associated cloud backup systems and are never retained by the KMT2C Foundation.

The KMT2C Foundation is a patient advocacy and research organization. Our role is to bring together patients, families, clinicians, and researchers; support and advance scientific research; and work toward meaningful treatment options for the KMT2C community.

The KMT2C Foundation is not a healthcare provider or medical practice. In accordance with applicable federal and state laws governing the provision of healthcare and the practice of medicine, the Foundation, its staff, volunteers, and Board members do not provide individualized medical advice, diagnosis, treatment recommendations, or other clinical services.

The Foundation does not diagnose individuals, confirm or dispute diagnoses, interpret genetic variants or genetic testing results for individual patients, recommend or evaluate individual treatment decisions, or provide individual medical advice. Information provided by the Foundation for educational, advocacy, or research purposes is general in nature and is not a substitute for professional medical advice, diagnosis, or treatment.

Questions regarding a diagnosis, genetic test result, medical record, symptoms, treatment options, medications, or other individual healthcare decisions must be directed to a qualified physician, clinical geneticist, genetic counselor, or other appropriately licensed healthcare professional.

Medical information and biological samples for KMT2C research are collected and managed through Simons Searchlight, under its own consent, privacy, research, and clinical protocols. The KMT2C Foundation does not independently collect or maintain these medical records or biological samples.

These boundaries protect the privacy and safety of our families, maintain the appropriate distinction between patient advocacy and clinical care, and allow the KMT2C Foundation to remain focused on its mission: advancing research and working toward treatment options for the entire KMT2C community.