Ushers Syndrome Support Network

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Usher Syndrome Coalition

    https://www.usher-syndrome.org/
    Usher Syndrome Coalition: Connecting the Global Usher Community. Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and ...

Usher syndrome - Better Health Channel

    https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/usher-syndrome
    The Genetic Support Network of Victoria (GSNV) is connected with a wide range of support groups throughout Victoria and Australia and can connect you with other individuals and families affected by Usher syndrome. UsherKids Australia is a support and advocacy group for children and families affected by Usher syndrome. Learn more about support ...

Usher syndrome Sense

    https://www.sense.org.uk/get-support/information-and-advice/conditions/usher-syndrome/
    The Sense Usher Service specialises in Usher syndrome and can support you, your family and professionals. With the right support, you can overcome the challenges presented by Usher, and live a full, connected and independent life. Contact us on [email protected] or [email protected] for more information. You can also follow us on Facebook.

Support - UsherKids Australia

    https://www.usherkidsaustralia.com/support.html
    It may be helpful to find some professional support to help you talk through the impacts of Usher syndrome on you emotionally and physically, but if you need just to chat with another parent who has been there before and can share their experiences with you, ... The Genetic Support Network …

What is Usher syndrome?

    https://www.usher-syndrome.org/what-is-usher-syndrome/usher-syndrome.html
    Join the USH Blue Book to connect with individuals with Usher syndrome, family members and friends in a global network of support. Locate experts in the USH Yellow Book, a centralized directory of researchers and resources worldwide.

About us/Usher Syndrome Foundation

    https://ushersyndroom.nl/en/about-us/
    · At the international level set up a European and international Usher Syndrome network. Our method of working may sometimes be contrary and unorthodox, but this also is our strength! The Usher Syndrome Foundation does not receive any government support and is entirely dependent on donations and gifts from funds, private persons and companies.

Nonprofit Organization, Usher Syndrome Atlanta, GA

    http://www.usher2020.com/
    Usher Syndrome slowly robs the sight of those who are already deaf. Every day, people all over the world are slowly losing their sight due to a rare genetic disorder called Usher Syndrome. The real tragedy is that these same people already lost their hearing and struggle with maintaining their balance.

Usher syndrome - Wikipedia

    https://en.wikipedia.org/wiki/Ushers_syndrome
    Usher syndrome, also known as Hallgren syndrome, Usher–Hallgren syndrome, retinitis pigmentosa–dysacusis syndrome or dystrophia retinae dysacusis syndrome, is a rare genetic disorder caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment.It is a major cause of deafblindness and is at present incurable.Specialty: Ophthalmology

Usher Syndrome in the School Setting - National Center On ...

    https://nationaldb.org/library/page/2178
    Usher Syndrome in the School Setting I. Defining Usher Syndrome Usher syndrome is the name given to a group of genetic conditions involving both hearing loss and retinitis pigmentosa, a progressive, degenerative eye disease. There are three types of Usher syndrome described in the chart that follows.



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