Usher Syndrome Support

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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 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.

About Usher Syndrome – Hear See Hope

    http://www.hearseehope.com/about-usher-syndrome/
    Usher syndrome is the most common cause of deafblindness in the United States. It is a combination of Retinitis Pigmentosa (RP) and some level of hearing loss. There are about 10-15,000 people with Usher syndrome in the United States today.

Support Systems – Usher Network

    http://usher.deafblindinternational.org/support-systems/
    U.K. Please join our Usher Service public group. There are a number of Facebook groups and pages for people with Usher, and their families. Listed here are some of the longer established groups relevant to Usher syndrome/RP as of December 2015.

Donation Supports Usher Syndrome Research

    https://www.lsuhsc.edu/newsroom/Donation%20Supports%20Usher%20Syndrome%20Research.html
    “This support is critical to accelerate the development of new therapies for Usher syndrome in Louisiana.” The overall goal of Lentz’s research is to understand how genetic changes cause Usher syndrome and to develop a therapeutic approach to prevent or cure the deafness and blindness associated with Usher syndrome (Usher), the most ...

Usher Syndrome National Council for Special Education ...

    https://www.sess.ie/categories/assessed-syndromes/usher-syndrome
    Usher Syndrome is inherited and presents in the individual having difficulties with both hearing and vision. It is a major cause of Deafblindness (see page 144). Symptoms of Usher syndrome include hearing impairment and retinitis pigmentosa (an eye disorder …

Usher Syndrome - NORD (National Organization for Rare ...

    https://rarediseases.org/rare-diseases/usher-syndrome/
    Usher syndrome is a rare genetic disorder primarily characterized by deafness due to an impaired ability of the inner ear and auditory nerves to transmit sensory (sound) input to the brain (sensorineual hearing loss) accompanied by retinitis pigmentosa, a disorder that …



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