a group of hands. Caption 'Deafblind Awareness week 2020'

DBAW 2020

It’s Deafblind Awareness Week (DBAW) 2020, and the purpose of this week-long awareness campaign is to increase understanding and awareness of deafblindness. However, this year with COVID-19 having an enormous impact on the lives and well-being of those living with dual-sensory loss, we hope to also highlight during DBAW the difficulties the ‘new normal’ has… Read more »

Sina-Drums up funds for Usher syndrome research

CUREUsher were recently delighted to have received the support of Sina, a renowned drummer with nearly a million subscribers on YouTube, after she chose to ask her fans to help raise funds for CUREUsher to mark her birthday! During what are difficult and unprecedented times for many charities in the UK including CUREUsher, this was… Read more »

Advice from Retina International Scientific and Medical Advisory Board on the use of Chloroquine

Retina International recently published two very important statements in relation to Coronavirus, COVID-19.  Please take a moment to read these statements that refer specifically to –  Advice given by Retinal International Scientific and Advisory Board in relation to Chloroquine, a possible treatment for Coronavirus (COVID-19).  You can find out more by clicking here. Advice given… Read more »

ProQR logo

ProQR publishes interim findings on Stellar Clinical Trial

ProQR Therapeutics have released their first interim analysis of its phase 1/2 Stellar trial in adults with Usher syndrome and non-syndromic retinitis pigmentosa (nsRP) due to USH2A exon 13 mutations. The following summary provides an overview of this RNA-based clinical trial including a link for a patient community update document which contains more detailed findings.… Read more »

red background with text "COVID-19"


It’s a worrying time for everyone due to COVID-19, and CUREUsher feels it is important to ensure that accessible information is provided so everyone is kept informed of the facts and the necessary precautions that must be taken in order to delay and reduce the spread of COVID-19. Below we have shared a few links… Read more »

Caption says: Rare Disease Day #RareDiseaseDay #UsherSyndrome

Rare Disease Day 2020

Rare Disease Day took place on 29th February 2020. It was a very successful day with awareness of many rare diseases being raised across the world, and the reality of living with it. CUREUsher took part by in the day by sharing facts about Usher syndrome, the leading genetic cause of deafblindness across our many… Read more »

: A poster of a young boy who has Usher syndrome smiling and holding a small gold football boot trophy. Details of the fundraiser are printed on the poster.

Ashton’s Fundraiser

Nearly five years after receiving his cochlear implants the family of 7-year old Ashton Andrews were devastated to learn recently that Ashton has Usher syndrome which is the leading genetic cause of deafblindness. Moved to action to help try and find a cure for Ashton, they are holding a fundraiser in March with funds from… Read more »

Caption says 'Design a Christmas Card Competition'. CUREUsher?s logo has a moving Santa hat, and says it is supported by Busybeaders.

Take part in our Christmas Card Competition!

With sincere thanks to Busybeaders.com for supporting this competition, CUREUsher is kicking off its search for our 2020 Christmas Card Design! This competition is open to everyone of all ages to send in their design, based on the theme of ?Together?, and can be a photograph, painting, computer art or illustration. If your entry is… Read more »

CUREUsher and Stichting Ushersyndroom presenting a cheque to researchers for Usher syndrome research.

CUREUsher co-finances its first Usher syndrome research study

CUREUsher is very pleased to officially announce its co-financing of a new research study in a collaboration effort with Stichting Ushersyndroom, a foundation based in the Netherlands. This exciting new research study will focus on minigene therapy as a possible treatment for retinitis pigmentosa associated with Usher syndrome 2C. The study, which is receiving a… Read more »

World Sight Day 2019 logo

World Sight Day 2019

Today is World Sight Day (WSD), an annual day of awareness to focus global attention on blindness and visual impairment. According to the World Health Organisation(WHO), there are approximately 2.2 billion people globally that have a visual impairment or blindness, of whom at least 1 billion have a vision impairment that could have been prevented… Read more »