Usher Syndrome Organizations in the world

9

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 deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

Retina International (RI) is a patient-led, global, umbrella NGO for patient-led groups around the world focused on research and support for rare and common retinal diseases.Retina International.

Australia

Usher Kids Australia. UsherKids Australia is a network established to advocate for children diagnosed with Usher syndrome, a rare genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction.

Austria

Usher Initiative Austria. Former Usher Syndrome Coalition Forum Austria
Patient Advocacy Usher Syndrome and Rare (Eye) Diseases
Connecting Usher families and sharing information on state of research

Germany

Leben mit Usher-Syndrom e.V. The purpose of the association is to support and accompany usher victims and their relatives. The psycho-social aspect, including counseling, is very important in the association. The experiences of those affected form a valuable basis for effective and efficient advice and support. The association wants to give new impulses and lives from the suggestions, wishes and the commitment of those affected by Usher and their relatives. In addition, the association offers the possibility to accept donations especially for those affected by Usher and to use them for them.

Italy

Lega del Filo d’Oro. Since 50 years we have been assisting, educating, rehabilitating and reintegrating deafblind and psychosensory impaired people in the family and in society.

Retina Italia is the National Association for the fight against hereditary retinal dystrophies and has as main purpose the promotion and development of scientific research for the identification of the causes, treatment and prevention of retinitis pigmentosa, macular degenerations, hereditary retinal dystrophies and other pathologies that determine low vision and blindness. Consequently,

NoisyVision. NoisyVision aims to contribute to the epochal change in the perception of disability, from limit to value, creating an inclusive community where diversity is recognized as creative and expressive resource.
Founded by Dario Sorgato, who has Usher Syndrome, it is mainly focused on this disease.

Netherlands

Stichting Ushersyndroom (Usher Syndrome Foundation) is a network organization for and by people with Usher Syndrome, supported by their social environment. The main objective of the foundation is fundraising to promote scientific research. This research must lead to an effective treatment of Usher Syndrome.
In addition, the foundation also pays attention to generating name recognition, awareness and advocacy in the broadest sense of the word for people with Usher syndrome and their families.

Unite Kingdom and Ireland

CUREUsher. Collaboration. Usher Syndrome. Research. Empowerment. The four key words of CUREUsher’s logo represents the charity’s core beliefs which could bring us closer to our goal of finding a treatment or cure for Usher syndrome. We strongly believe that more collaboration between researchers, organisations and patients is the key to achieving our goal. By bringing knowledge and participation together it could lead to a better understanding of Usher syndrome, how the disease works, and potentially lead to a treatment/cure.

Usher Kids UK is a network established to support, inform, connect and advocate for children diagnosed with Usher syndrome and their families.

Sense. For everyone living with complex disabilities. For everyone who is deafblind. Sense is here to help people communicate and experience the world. We believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential.

United States

Usher Syndrome Society. The Usher Syndrome Society is a non-profit that uses the arts, educational events, and collaboration to raise awareness and funds for treatments and a cure for Usher syndrome (USH).

Ava’s Voice. The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families and school communities.

Usher 1F Collaborative. Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

Hear See Hope Foundation. Our mission is to help find a cure for Usher Syndrome, the most common cause of deafblindness in the U.S. 99% of the money we raise goes toward research. We are a 501(c)3 not-for-profit organization in search of funds to sustain the fight against Usher syndrome. Please help us make a difference by supporting our fundraising efforts to prevent, treat, and cure Usher syndrome.

Hearing Health Foundation, Foundation Fighting Blindness

 

 

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