![]() Retina Italiais 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. Since 50 years we have been assisting, educating, rehabilitating and reintegrating deafblind and psychosensory impaired people in the family and in society. In addition, the association offers the possibility to accept donations especially for those affected by Usher and to use them for them. The association wants to give new impulses and lives from the suggestions, wishes and the commitment of those affected by Usher and their relatives. The experiences of those affected form a valuable basis for effective and efficient advice and support. The psycho-social aspect, including counseling, is very important in the association. The purpose of the association is to support and accompany usher victims and their relatives. 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 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. 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. The Coalition also provides information and support to individuals and families affected by Usher syndrome. The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. “It’s great to have a joint clinic where all the experts are working together and to be treated at a place that is up on the latest research.Usher Syndrome Coalition. We realized there are others out there dealing with this condition and that we are not alone,” comments Sara. “It meant a lot to have a diagnosis and explain how the puzzle fits together. While at UI Stead Family Children’s Hospital, Andrew was also evaluated by vision rehabilitation expert Mark Wilkinson, OD, who helped the family identify resources and strategies to help young Andrew adapt to his situation and maximize his remaining vision. ![]() The family was referred to Arlene Drack, MD, a pediatric ophthalmologist specializing in genetic disorders who determined that Andrew’s vision issues are due to Retinitis pigmentosa associated with Usher syndrome. Physicians arranged an OtoSCOPE genetic test with Richard Smith, MD, professor of otolaryngology – head and neck surgery at University of Iowa Stead Family Children’s Hospital, which confirmed the cause of hearing loss and type of Usher syndrome that Andrew had. The Needhams visited several local physicians including a neurosensory genetics group that clinically diagnosed Andrew as having Usher syndrome, a condition that affects both hearing and vision. His parents, Sara and Charles Needham of Bellevue, Neb., have no family history of Usher syndrome so they knew nothing about the genetic disorder that was affecting their son. Cochlear implants and physical therapy helped address these conditions but then he began to experience vision loss at 2 ½ years old. Young Andrew Needham experienced hearing loss before displaying balance problems with his early walking.
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