We are pleased to announce a new USH Partner, CUREUsher.
CUREUsher is a public awareness and scientific research-oriented, patient-led, registered charity based in the United Kingdom. Their goal is to inspire and encourage further collaboration between scientists, patients and all those touched by Usher syndrome.
Our first collaborative initiative is a two-fold biannual awareness day campaign, connecting the Usher syndrome community and their circle of support.
On the third Saturday of September, we encourage the USH community globally to join together and raise public awareness of this rare condition. Six months later, we broaden our awareness efforts to include the clinicians who support those with USH. The United Kingdom’s National Health Service (NHS) has officially recognized the 2nd of March as Usher Syndrome Clinician Awareness Day, in recognition of Charles Usher, the Scottish ophthalmologist who, in 1914, pioneered the understanding of this condition, and for whom this syndrome is named.
Starting in 2022, there will be two global days a year where we can spread the word about Usher syndrome.
Message from Jo Milne, Founder and Trustee of CUREUsher:
“I am thrilled that CUREUsher and the Usher Syndrome Coalition are launching a two-fold biannual awareness day campaign.
I have lived a life with Usher syndrome and, it warms my heart to think of the increased opportunities to further our voices, to engage with the Usher community, organisations and clinicians worldwide - building on the relationships and successes we have engendered.
Our partnership is another valuable step forwards in the shared journey to achieve global awareness of Usher syndrome and ultimately help to find the key to it all - a cure."
The Usher Syndrome Coalition is excited to collaborate with CUREUsher to best serve the entire global community and accelerate research towards treatments. Together, let’s make Usher syndrome history. Please join us in welcoming CUREUsher as our newest USH Partner!