Usher Syndrome Ireland is a new non-profit charity that was set up with the mission of stimulating and funding, new and current, research for cures and treatments for this rare genetic disease that causes progressive sight loss and hearing loss. Additionally, Usher Syndrome Ireland aims to support those living with this disease in the form of family networking events, provision of information, and patient advocacy in the health sector and pharmaceutical industry.
As we are brand new, we will be continuously updating this website with more contents over the coming months! You can stay up to date by following any of our social media accounts or by subscribing below to receive updates.
We are an organisation that aims to increase awareness and understanding of Usher syndrome, be a trusted source of information, along with the objectives of stimulating a much needed drive for scientific research for a cure or treatment for Usher syndrome. You can read our mission statement here.
Our team is made up of dedicated and incredibly passionate members who work in a voluntary capacity meaning that no team member is paid for their time or work. Read more about each of our team member and why they became involved with Usher Syndrome Ireland.
Over the next few months and years, we will be working hard to grow Usher Syndrome Ireland and as it becomes bigger we may need volunteers from time-to-time to help us. If you are interested in becoming a volunteer for us, please click the button below.
Usher syndrome is a rare, genetically inherited, disease that causes hearing and progressive sight loss.
Click to read more here to understand how Usher syndrome affects the eyes, ears, balance, and more.
Sharing stories has many benefits including feeling less alone. Our new blog section will bring you personal stories written by people who are living with Usher syndrome.
If you would like to share yours, please let us know here.
Many different approaches are being undertaken by different researchers to find a treatment for Usher syndrome, and that can be confusing.
Here we outline some of these approaches with a brief overview.
We'd love to hear from you!
Send us a message using the Contact Us button below, and we will get back to you soon.
Your generous donation will go directly towards our mission.