Blog

QR-421a: Showing Benefits on One out of Four Usher Syndrome patients

Original article on AP News QR-421a showed early and encouraging evidence of activity, with 25% of patients showing a benefit…

Thursday April 2nd, 2020

Netblind, the App that helps the blind to find a volunteer

Being blind means having dinner with a packet of crackers because you have not found someone to accompany you to…

Monday March 30th, 2020

Is perfume forbidden as well?

For people could close their eyes to greatness, to horrors, to beauty, and their ears to melodies or deceiving words.…

Friday March 20th, 2020

When touching is forbidden

When I was 18 years I was diagnosed with Usher Syndrome and it took me another eighteen years to understand…

Thursday March 19th, 2020

Freedom is within us, a partially sighted says.

Yesterday I decided to try not to read news, articles, numbers. It is difficult because the situation evolves rapidly and…

Monday March 16th, 2020

Isolated because excluded: when we are the virus.

The situation we are experiencing in these days following the stringent restrictions to limit the spread of the coronavirus, leads…

Wednesday March 11th, 2020

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

Vision, Hearing, Happyness. Events we celebrate.

Here is the calendar of events, international days that interest us and that we want to celebrate in a different…

Tuesday February 25th, 2020