Deafness, loss of balance and sight at risk, Bruna’s syndrome still without a cure.

“When we were still mourning the deafness, they told us there was more: she would not have balance either, and she would lose her vision”

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Interview of EFE Agency | 31.12.2022

Faced with this challenge, Berta and Arnau founded Save Sight Now Europe (, an association with a clear objective: to cure Retinitis Pigmentosa (RP) in Usher syndrome type 1B patients, which is characterized by progressive retinal degeneration.

They found the case of Lia, a girl from the United States whose parents had promoted the Save Sight Now organization and decided to import the model in Europe. On both sides of the Atlantic, the spirit is the same: “Build bridges between research groups, give them what they need to speed up research and work with families,” Arnau specifies.
In Spain, they have so far located four cases with which they collaborate and have established links with families from along Europe.

The organization is also in charge of collecting donations, promoting solidarity events, and supporting biomedical research that can benefit all types of Usher, giving priority to 1B, which is the most severe case.
Gene therapies have made great progress in recent years and stand as the great hope that these Catalan parents have never lost.
“We are confident that there will be something and we hope that Bruna can benefit from it, that she arrives early so that she does not lose sight,” wishes Arnau.

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