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I am rare. Actually unique. Rare Disease Day

"When I found out I was stunned. It was clear that it was #rare but I didn't think so rare.…

Saturday February 29th, 2020

Rare Diseases, Zero Discrimnation and Hearing. Three International Days we celebrate.

These three important celebrations are one after the other and in a way or another they relate to us and…

Wednesday February 26th, 2020

Research projects supported with our fundraising.

February is low vision awareness month and therefore it is the right time to give you this important news. In…

Tuesday February 11th, 2020

Low Vision and Legal Blindness Terms and Descriptions

Facts about Low Vision Most surveys and studies indicate that the majority of people in the United States with vision…

Monday February 3rd, 2020

February, low vision awareness month

According to several sources, including the Foundation Fighting Blindness (one of the most authoritative organizations to combat eye diseases) and…

Saturday February 1st, 2020

How many are the senses of the human being?

"You have a sixth sense" it is said attributing someone else a sort of super-power, which goes beyond the canonical…

Friday January 31st, 2020

When Should You Tell Your Child That He Or She Has Usher Syndrome?

by Mark Dunning Original article appeared on Usher Syndrome Coalition Website Thanks to genetic testing, we are now able to…

Wednesday January 29th, 2020

A cure for Retinitis Pigmentosa: walking in nature

It is a fact that to date there are no cures or therapies for retinitis pigmentosa. We have collected in…

Tuesday January 28th, 2020

What do I do now?

Translated from Italian by Elisabetta Vianello. Here is another one story. They all look the same and are all different.…

Thursday January 16th, 2020

Usher Syndrome Organizations in the world

International Usher Syndrome Coalition. The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined…

Monday January 13th, 2020