Usher syndrome, type 1
Other Names for this Disease
- Retinitis pigmentosa and congenital deafness
- Usher syndrome type 1
News & Events
ORDR Co-Sponsored Conferences
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015 - Wednesday, June 10, 2015
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.
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>
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
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.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
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