June 2013: International Symposium on Usher Syndrome - Register Now

INTERNATIONAL SYMPOSIUM ON USHER SYNDROME

Thursday, July 10th, 2014 – Friday, July 11th, 2014

SIXTH ANNUAL USHER SYNDROME FAMILY CONFERENCE

Saturday, July 12th, 2014

The Joseph B. Martin Conference Center at Harvard Medical School

77 Avenue Louis Pasteur, Boston, MA 02115

 

International Symposium on Usher Syndrome | History in the Making

The Usher Syndrome Coalition presents the Third International Symposium on Usher Syndrome in conjunction with the Sixth Annual Usher Syndrome Family Conference in Boston, Massachusetts at Harvard Medical School's Joseph B. Martin Conference Center.
 
The two-day Symposium on July 10-11 will be a scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher Syndrome research. One of the goals of this symposium is the creation of a roadmap. This roadmap will identify our knowledge gaps on the disease and it will guide future research efforts for years to come.
 
The Family Conference on July 12 is an opportunity to learn about the latest research and news, and to connect with researchers, other Usher individuals and families. Breakout sessions will be held for Family Conference attendees, providing an opportunity to discuss various issues related to living with Usher syndrome. Genetic counseling sessions are also available, giving attendees the chance to discuss their genetics questions during one-on-one conversations with counselors.
 
This will be the largest gathering of the Usher syndrome community in history.  If you have any connection to Usher syndrome, whether through family, friends, or profession, we hope you will be here.

 

About Usher Syndrome

Usher Syndrome is the leading cause of deaf-blindness in the world.  Approximately 45,000 Americans are affected by this genetic disorder. Children with Usher Syndrome are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. Early in life they will experience symptoms of a progressive vision disorder known as retinitis pigmentosa (RP). Initially, they will develop night blindness, followed by a narrowing of the visual field, commonly known as “tunnel vision,” leading eventually to complete blindness. Most individuals with Usher Syndrome are legally blind by the time they are young adults.

While there are currently no universally agreed upon treatments for Usher Syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher Syndrome. 

 

About the Coalition

The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
 
The Coalition counts a number of leading institutions and researchers among its members. Member institutions bring their expertise and commitment to the work of the Coalition, collaborating with partners and researchers from some of the finest international organizations in the world. In short, the Usher Syndrome Coalition strives to be the most comprehensive resource for the Usher syndrome community.

This conference was supported by the National Institute On Deafness And Other Communication Disorders, the National Eye Instiute and the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number R13DC013968. The content is solely the responsibility of the presenters and does not necessarily represent the official views of the National Institutes of Health.

For more information, contact Krista Vasi at k.vasi@usher-syndrome.org.

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