Wolfram Syndrome Global Awareness Day Date in the current year: October 1, 2025

Wolfram syndrome is a neurodegenerative disease caused by mutations in either the WFS1 (type 1) or the CISD2 (type 2) gene. The disorder is also known by the acronym DIDMOAD, which refers to its main manifestations: diabetes insipidus, diabetes mellitus, optic atrophy, and deafness.

Overlapping symptoms of the two subtypes include childhood-onset diabetes mellitus, optic atrophy (which results in blindness or profound vision impairment by age 15–20), sensorineural hearing loss, and genitourinary problems (e.g., incontinence and duct obstruction).

Other symptoms may include balance and coordination issues, muscle spasms, seizures, behavioral problems, and peripheral neuropathy. Wolfram syndrome type 1 is associated with diabetes insipidus, which is characterized by increased thirst and the production of large amounts of dilute urine. Wolfram syndrome type 2 is associated with an increased risk of gastrointestinal ulcers and bleeding.

Like most rare genetic conditions, Wolfram syndrome is incurable, though research to find more effective treatments and possibly a cure is ongoing. Treatment focuses on alleviating individual symptoms and managing complications and usually requires a team of medical professionals, including endocrinologists, ophthalmologists, audiologists, neurologists, urologists, psychologists, and geneticists.

Diabetes mellitus is managed through insulin therapy, blood glucose monitoring, and standard diabetes care. If present, diabetes insipidus is treated with desmopressin to control water balance. Vision loss is managed with low-vision aids, and hearing loss is managed with hearing aids or cochlear implants, if appropriate. Neurological and psychiatric symptoms, such as ataxia, neuropathy, and mood disorders, are treated symptomatically with rehabilitation, medication, and psychological support.

Wolfram Syndrome Global Awareness Day is led by Wolfram Syndrome UK and supported by other organizations, including Alianza de Familias Afectadas por el Síndrome de Wolfram (Spain), Asociación Española para la Investigación y Ayuda al Síndrome de Wolfram (Spain), Association Syndrome de Wolfram (France), Wolfram Syndrome Germany, Associazione Gentian (Wolfram Syndrome Italy), the Snow Foundation for Wolfram Syndrome Research, the Wolfram Syndrome Research Alliance, the Ellie White Foundation for Rare Genetic Disorders, and the Eye Hope Foundation.

The day aims to raise global awareness of Wolfram syndrome and highlight the importance of early diagnosis and continued research into treatment methods. You can get involved by learning more about Wolfram syndrome and sharing what you’ve learned with others, donating to an organization that supports patients and their families or funds research, and spreading the word on social media to raise awareness.