- Deafness-retinitis pigmentosa syndrome
- Dystrophia retinae pigmentosa-dysostosis syndrome
- Graefe-Usher syndrome
- Hallgren syndrome
- Usher's syndrome
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ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
International Usher Syndrome Conference , Thursday, July 10, 2014 - Saturday, July 12, 2014
Location: Joseph B. Martin Conference Center at Harvard Medical School, Cambridge, MA
Description: <p>The goals are to: 1) Promote research in emerging areas of USH diagnosis, prevention, treatment, and cure; 2) Present new research findings and develop future research strategies; (3) Promote collaboration among researchers and clinicians from different institutions and different research focus areas who study USH; (4) Educate patients/families affected by Usher Syndrome about research advances and promote collaboration between these families and USH researchers; 5) Make researchers and clinicians aware of the needs of USH patients and families to direct new research priorities.</p>
Gene Transfer and Rare Diseases Workshop, Thursday, September 13, 2012
Location: Rockville Hilton, Rockville, Maryland
Description: The NIH Office of Biotechnology Activities and Office of Rare Disease Research, NCATS, are co-sponsoring a workshop to discuss the advances in and challenges of gene transfer for rare diseases. There have been recent promising clinical successes in gene transfer protocols for rare diseases, such as retinal degeneration, hemophilia, and immune disorders. Investigators will discuss their results to date and opportunities and challenges for extending these successes to other similar rare diseases. The panel discussions will focus on strategies for maximizing opportunities for data sharing or platform development.
Neural Interfaces Conference 2010 , Monday, June 21, 2010 - Tuesday, June 22, 2010
Location: Long Beach Convention Center, Long Beach, California
Description: The goal of the workshop was to present state-of-the-art technological advances to both the neural prosthesis and deep brain stimulation (DBS) communities while encouraging interaction between these two groups to develop new collaborations to create therapies for human use. In addition, inclusion and showcasing of trainees was an important goal. Student poster presentations fostered scientific exchange, networking, and communication among registrants and 20 travel awards were given to qualifying undergraduate, graduate or medical students, and postdoctoral fellows. One such interaction between student and principal investigator (PI) has resulted in the student becoming a postdoctoral fellow in the PI’s laboratory.
Rare Diseases II: Hearing and Sight Loss, Sunday, November 22, 2009 - Friday, November 27, 2009
Location: Hotel Eden Roc, Sant Feliu de Guixols, Spain
Workshop on Potential Therapeutic Use of Neurotrophic Factors for Ocular Diseases, Thursday, November 07, 1996
Location: NIH Campus, Bethesda, MD