Save Sight Now Europe An Organisation

Save Sight Now Europe | Foundation Usher Syndrome, we are dedicated to advancing research and finding a cure and treatment for Usher Syndrome type 1B, particularly focusing on Retinitis Pigmentosa, the leading cause of blindness in Usher syndrome. We dedicate all our effort and determination to providing a brighter future for everyone living with Usher Syndrome type 1B.

Save Sight Now Europe operates as a European organization with dual headquarters located in Spain and Switzerland.

Objectives

Committed to curing childhood blindness

Imagine, for a second, having to face the world without hearing any sound, without balance, and without sight.

Usher Syndrome Type 1B is a genetic disorder that deprives children of their hearing and balance from the moment they are born. Their eyesight also quickly deteriorates until they become completely blind. Usher Syndrome is the most common cause of deaf-blindness, causing 50% of cases around the world.

Save Sight Now Europe’s goal is to find a cure for Retinitis Pigmentosa, the cause of blindness related to Usher Syndrome. We strive to reach a point where people living with Usher Syndrome Type 1B, a widely neglected community, don’t lose their sight, which is an essential sense to experiment and experience the world around them. We know that this is possible because successful treatments for other kinds of retina conditions have already been approved by the Food and Drug Administration (FDA).

We work closely with European and international inherited retinal disease organizations and research teams such as Institut de la Vision, IOB, Foundation Fighting Blindness, and Usher Syndrome organizations begining with our collegues in US Save Sight Now and patient organisations such as Usher Kids UK, Ava’s Voice, Usher Kids Australia, Usher Syndrome Ireland, Usher Syndroom, to generate community and build bridges to help cover the possible gaps.

Even though most of the research efforts we will be financing can benefit all three types of Usher, we will prioritize treatments for Usher Syndrome Type 1B, because it is the most severe and virulent form of this syndrome and is the type that affects our children.

Scientific Advisory Board

The Scientific Advisory Board aims to provide expert guidance and oversight to support the foundation’s efforts in advancing scientific research towards finding a treatment for Usher Syndrome type 1B. With the inclusion of experts from Switzerland and Spain, we benefit from a diverse array of expertise.

Giacomo Calzetti, MD
Ophthalmologist and Researcher at the Institute of Molecular and Clinical Ophthalmology Basel (IOB), Basel, Switzerland Principal Investigator at the Vista Vision Eye Clinic, Brescia, Italy
Bence György, MD, PhD
Assistant Professor at the University of Basel and Head of Ophthalmic Translational Research Group at the Institute of Molecular and Clinical Ophthalmology Basel (IOB).
Jaume Català Mora, MD, PhD
Pediatric Ophthalmologist at Sant Joan de Déu Children's Hospital in Barcelona, Spain
José María Millán Salvador, PhD
Researcher at the Instituto de Investigación Sanitaria La Fe (IIS La Fe), Valencia, Spain
Arnau Espinosa Manzanal, MSc, Senior Engineering Manager at Wyss Center
Co-Founder and Secretary
Board of Directors

Berta Adell Palau

Co-Founder and President

Arnau Espinosa Manzanal

Co-Founder and Secretary

Júlia Espinosa Manzanal

Co-Founder and Vice President.

Hermès Solé

Co-Founder and member.

Transparency

We are completely transparent with everyone who trusts us. We share our work and give an account of ourselves on a regular basis. For any question do not hesitate to contact us.

Foundation documents

The Foundation Usher Syndrome is a non-profit organisation registered in Spain with the Foundations Register of Generalitat de Catalunya under the number 3.360 with tax deductions for its donors.

Foundation Statutes

The foundation’s statutes are a legal document that defines the foundation’s purpose, structure, and governance.

Foundation Registration

Registration in the Registry of Foundations of the Generalitat de Catalunya

Resolution of the registration

Resolution of the registration in the Registry of Foundations of the Generalitat de Catalunya

Tax regime certificate

Association documents

The Association Save Sight Now Europe Switzerland is a non-profit organisation registered in Switzerland number 080.124.875 with tax deduction ICC & IFD (communal, cantonal, and federal tax deduction).

Association Statutes

The association’s statutes are a legal document that defines the association’s purpose, structure, and governance.

Support us

Become a member!

You can join Save Sight Now Europe as a member and make a difference in the lives of children affected by Usher 1B.

Our network and Friends

Organizations that play an essential role in promoting research, public awareness, and support for those suffering from hereditary retinal dystrophies and rare diseases related to blindness, such as Usher Syndrome, worldwide.