Senate Pushes for Treacher Collins Syndrome Policy Reform

Mexico’s Senate is taking steps to increase awareness and improve care for individuals living with Treacher Collins syndrome, a rare genetic condition that affects facial bone and tissue development. Simey Olvera, President, First Commission for Legislative Studies, calls for action to support patients and reduce discrimination, citing a rise in diagnosed cases across the country.

During the opening of Dialogues for Inclusion: The Case of Treacher Collins Syndrome meeting, Olvera emphasized the Senate’s responsibility to design public policies based on accurate data to ensure dignified, timely, and humane care. She also advocated for creating legal frameworks that enable multidisciplinary treatment and early diagnosis, which are crucial for improving quality of life.

Olvera aims to designate May 28 as National Treacher Collins Syndrome Awareness Day. The initiative was developed in collaboration with civil society organizations.

Emmanuel Reyes, President, Senate’s Economic Committee, says that Treacher Collins syndrome is not included in the Ministry of Health’s list of 23 recognized rare diseases. Raising awareness is a step toward recognizing the state’s obligation to protect the health, dignity, and lives of all citizens, says Colomba del Carmen Nettel, Director, Office of Civil Society Engagement.

Treacher Collins syndrome, also known as mandibulofacial dysostosis, affects about one in every 50,000 live births in Mexico. It can lead to facial differences, hearing impairment, and in some cases, respiratory and feeding challenges. Despite its impact, the condition remains under-recognized in national health policy frameworks.