Last September 21st, on the occasion of Global Usher Syndrome Awareness Day, we published the video “Usher Syndrome. Game Over” on our social media channels.
Read ProQR is developing a novel investigational drug called QR-421a to treat RP in patients that have USH2 due to a mutation in a specific part of the USH2A gene, called exon 13.
Read Tales in Sombre Tones is an exciting new touring show with the specific aim of opening up art and literature for all.
Read RI USH SIG launches newsletter
Retina International’s Special Interest Group for Usher Syndrome (RI USH SIG) has launched their newsletter to share up-to-date information on Usher Syndrome advances around the world.
Read NEPTUNE LIKES IT YELLOW
#YellowTheWorld goes by sea From August 24th to 31st 2019 aboard Adriatica, the boat of Velisti per Caso, an integrated crew of visually impaired, blind and normal sighted people will sail the Tyrrhenian from Naples to the Island of Elba.
Read How many times have we found ourselves mistaken for impostors or feeling unrecognized in our potential or difficulties? It happens to everyone, but if you are visually impaired, it could happen more often.
Read It is important to create an Usher Syndrome Community because we need to join efforts, resources and ideas and address them in one direction to have a stronger impact.
Read One week ago, on July 13th 2019, At Marriot Downtown Philadelphia, was held the 11th Usher Syndrome Conference organized by Usher Syndrome Coalition.
Read Do you remember the story of Lizzy?
She is the little girl from Ohio with Usher Syndrome that in 2016 was all over the news because she was able to meet Pope Francis, as one of her Bucket List wishes.