International Deafblindness Day

In 2025, the United Nations General Assembly officially proclaimed 27 June as the International Day of Deafblindness, recognising it as a distinct disability requiring specialised support and inclusion.

While CHARGE syndrome is a leading cause of congenital deafblindness, many others also live with acquired or syndromic deafblindness. This day highlights the diverse experiences and rights of the global deafblind community.

Deafblindness is a combined vision and hearing impairment of such severity that one sense cannot compensate for the other. It is a distinct disability with unique challenges, barriers, and support needs, differing significantly from those of individuals who are solely deaf or blind.

Deafblind persons face barriers owing to deafblindness not being treated and/or recognized as a distinct disability, further leading to invisibility in statistics, policies and programmes, and therefore impeding access to services.

Professional deafblind interpreters, interpreter-guides and communication guides are critical in ensuring access to information, communication, services and fundamental rights, as well as enabling individuals with deafblindness to live independently and be included in the community.

For people with CHARGE syndrome, all seven senses may be affected (vision, hearing, taste, touch, smell, proprioception, vestibular). They have unique and wide-ranging learning needs with their ability to learn significantly hindered by vestibular dysfunction, sensory processing disorders and sensory integration/self-regulation difficulties.

Raising awareness of deafblindness helps drive inclusive healthcare, education, and policy by promoting understanding, reducing stigma, and encouraging tailored support for individuals with CHARGE syndrome. It empowers families, improves access to vital services, and ensures individuals can participate fully in society.