Mónica Cabrera and Crouzon syndrome: the Asperger World Meeting gives visibility to rare diseases

From its first edition the Asperger World Meeting made clear it would not talk only about Asperger. In 2022 the organizer said so at the opening: the event “also seeks to give visibility to other conditions” because it believes in “a genuine diversity of ways of thinking and of minds.” One of those voices was Mónica Cabrera.

Who Mónica Cabrera is

Mónica Cabrera is an educational psychologist and school-integration professional in Caracas, Venezuela. She was recognized as the first educational psychologist teacher in her municipality and received the Teacher of the Year 2021 award. And she is a person with Crouzon syndrome, a rare genetic disease that affects the development of the bones of the skull and face.

Living beyond the diagnosis

“I'm only 38 and we've already had 13 surgeries: skull reconstructions, maxillofacial and eye surgery… But that hasn't stopped me from reaching my goals.”

Her message at the Meeting was an invitation not to reduce anyone to “a band, a diagnosis or a few specific traits because the DSM says so.” The same idea that runs through the event: people are far more than a list of features.

February, rare disease month

Cabrera reminded the audience that Crouzon syndrome falls within the rare diseases, and that February is their awareness month (Rare Disease Day is marked on the last day of February). She called for training teachers and raising society's awareness “about the existence of each and every one of these conditions.”

Why this makes the Meeting a reference

Few autism events open their programme to other conditions. By doing so deliberately and consistently — edition after edition — the Asperger World Meeting has positioned itself as a reference platform for giving visibility to little-known conditions and for building bridges between communities that usually work separately: Asperger, autism, rare diseases and disability.