Learn About The Organizations Behind Us

Research Collaborators

These organizations work with the Coalition to advance Usher syndrome research and support the Usher syndrome community.

  • The Audiological Research Centre in Örebro, Sweden, is a co-operation between the Department of Audiology, the University Hospital of Örebro, Örebro University and the Swedish Institute for Disability Research. The aim is interdisciplinary clinical research in Hearing, Deafness and Hearing disorders. The centre comprises state of the art auditory research laboratories. The staff and researchers are physicians, engineers, nurses, audiologists, sociologists, psychologists and admi­nistrative personnel. In 2009, 10 senior researchers and 15 doctoral students are perfor­ming audiological research at the Audiological Research Centre. A national data base on subjects with Usher syndrome I, II and III is located in Örebro. The research concer­ning Usher syndrome is performed in cooperation with the University of Lund (Sweden), University of Copenhagen (Denmark), Boystown National Research Hospital, Omaha Nebraska (USA) and the University of Iowa (USA).

  • Boston Children's Hospital is home to the world's largest research enterprise based at a pediatric hospital. More than 1,100 scientists comprise our research community, including 9 members of the National Academy of Sciences, 11 on-staff members of the Institute of Medicine and 9 members of the Howard Hughes Medical Institute. Current initiatives have attracted a record $225 million in annual funding, including more federal funding than any other pediatric facility.

  • Boys Town National Research Hospital provides nationally-oriented clinical and surgical services. Research programs focus on childhood deafness, visual impairment and related communication disorders.

  • Casey Eye Institute is an academic regional eye center dedicated to preventing blindness through research and to bringing advanced technology to the Pacific Northwest through continuing education of physicians. Casey educates medical students, residents, fellows, practicing ophthalmologists and other health care providers. The ophthalmology residency program is consistently rated as one of the top U.S. programs and is the site of the first study that aims to treat RP due to Usher syndrome by gene therapy.

  • The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, age-related macular degeneration, Usher syndrome and the entire spectrum of retinal diseases.

  • The Harvard Medical School Center for Hereditary Deafness has a mission to bring researchers, clinicians and families together to better understand hereditary hearing loss. The center includes clinicians and researchers from Harvard Medical School, Children's Hospital Boston, Brigham & Women's Hospital, Massachusetts General Hospital, Massachusetts Ear & Ear Infirmary, Harvard School of Public Health and other Harvard-affiliated institutions.

  • The Laboratory for Molecular Medicine (LMM) is a CLIA-certified molecular diagnostic laboratory, operated by Partners HealthCare Personalized Medicine. The LMM is led by a group of Harvard Medical School-affiliated faculty, geneticists, clinicians, and researchers from Brigham and Women’s Hospital and Massachusetts General Hospital, Partners' founding members. Our mission is to bridge the gap between research and clinical medicine by remaining focused on the following: leading the implementation of advanced technologies and practices into molecular diagnostic testing; accelerating the adoption of new molecular tests into clinical care; incorporating information technology (IT) support into the day-to-day operations of the clinical laboratory; and advancing clinical care with our participation in innovative programs that aim to keep physicians current on and knowledgeable of genetic information relevant to their patients.

  • Ranked as one of the best children's hospitals in the country by U.S. News & World Report and Child magazines, Seattle Children's Hospital serves as the pediatric referral center for Washington, Alaska, Montana and Idaho. Founded in 1907, Children's provides excellent patient care with compassion and respect, and conducts cutting-edge pediatric research. They also serve as a respected educational resource for parents and healthcare professionals alike.

  • The University of Iowa Institute for Vision Research was created to accelerate the eradication of heritable human blindness through interdisciplinary research, education and clinical care. In April 2015, the Wynn Institute for Vision Research announced the creation of the William Kimberling Usher Research Laboratory, honoring one of the pioneers of Usher syndrome research, Dr. William Kimberling.

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