Caption says: Rare Disease Day #RareDiseaseDay #UsherSyndrome

March 6th, 2020

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 social media platforms. In case you missed them, here is what we shared.

We look forward to creating exciting plans for Rare Disease Day 2021, stay tuned!

 

Text saying it is rare disease day, join in in spreading awareness! rare diseases affect 300 million people worldwide.

Text explaining that rare disease are not so rare as there are 6000 known rare disease. caption "Usher syndrome is the leading genetic cause of deafblindness"

Text explaining that Usher syndrome casues sight and hearing loss. Some balance issues may be present in some cases text listing all the known types of Usher syndrome.

Text details the three types of Usher syndrome and the associated hearing loss. Text detailing how Usher syndrome affects each person differently. Natural history studies are important to understand why. .

Text detailing that three of CureUsher board members have Usher syndrome and can relate to many in the rare community because of this. Text detailing how living with rare disease day can create feelings of isolation. We believe in sharing stories to help ease this.

Text detailing benefits of Collaboration Text saying that rare disease day is a great way of spreading awareness among the public of rare diseases and the reality of living with it.




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