Usher Syndrome Ireland

 Patient Groups / by Jo McPherson / 67 views

Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural hearing loss and retinitis pigmentosa (RP) causing a slow progressive loss of sight. Some people with Usher syndrome also experience vestibular (balance) issues. It is the leading genetic cause for combined hearing and sight loss with an estimated 400,000 people worldwide having Usher syndrome with approx 200-260 people living in Ireland with this condition.

Usher Syndrome Ireland is a non-profit organisation run entirely by volunteers with the mission of advocating and increasing awareness of this rare condition, to be a trusted source of information for patients, families, and HCPs, and to raise funds for global scientific research to find a cure or treatment for Usher syndrome.

In July 2022 M4RD featured Usher Syndrome on #MysteryMonday, covering the basics to help medics and HCPs be more aware of this condition. You can view the highlights here