New Yorkers Who Suffer from Rare Gaucher Disease Invited to Attend Q & A Event with Experts Hosted by National Gaucher Foundation

Wednesday, October 17, 2018 General News
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During National Gaucher Awareness Month, National Gaucher Foundation is hosting its annual patient event in New York on October 27, where local New Yorkers who live with Gaucher - a rare genetic disease predominant in Ashkenazi Jews - will have the opportunity to interact with renowned experts and other patients across the country during a panel discussion. Members of the media are invited to attend to learn more about this rare genetic disorder and speak with patients and specialists.

NEW YORK, Oct. 17, 2018 /PRNewswire-PRWeb/ -- WHAT: "Ask the Experts" Panel Discussion & Champagne Dessert Reception

WHO:

National Gaucher Foundation

Speakers:

Pramod Mistry, MD, PhD, Professor of Medicine and Pediatrics and Professor of Cellular & Molecular Physiology in the Department of Internal Medicine at Yale University School of Medicine

Neil Weinreb, MD, FACP, Voluntary Associate Professor of Human Genetics and Medicine (Hematology) in the Miller School of Medicine at University of Miami

Heather Lau, MD, Director of Lysosomal Storage Disease Program Associate Director in the Division of Neurogenetics and Assistant Professor in the Department of Neurology at New York University School of Medicine

WHEN: Saturday, October 27, 2018 at 7:30 p.m.

WHERE: The Mezzanine, 55 Broadway, New York, NY 10006

National Gaucher Foundation is hosting its annual patient event on October 27, 2018. Timed to coincide with National Gaucher Awareness Month, the event will feature a panel of experts available to answer questions.

Though a rare genetic disease, one in ten Ashkenazi Jews are carriers of Gaucher. There is no cure for the disease, but with the proper treatment, symptoms can be managed.

Gaucher patients, family members or physicians who wish to register for the annual patient event can do so online. Those attending have an opportunity to ask the speakers questions on a broad range of topics. Questions can be submitted here in advance. The event will also be livestreamed and recorded for the benefit of patients unable to attend in person.

For the first time, NGF's event will offer an opportunity specifically for teenagers who suffer from Gaucher to meet. The Teen Meetup, geared toward teenagers between the ages of 12 and 17, will provide young patients with Gaucher the chance to connect about living with the disease. The meetup will be facilitated by Laurie Bailey, Clinical Research Manager in the Division of Human Genetics and Cincinnati Children's Hospital.

Also for the first time, National Gaucher Foundation has identified ambassadors from around the country who work to raise awareness about Gaucher. The full inaugural ambassador cohort will be present and the panel and reception.

During the event, National Gaucher Foundation will premiere, "One of Those Dates," a short film produced by acclaimed Israeli TV and film screenwriter and journalist Itay Segal. The film is a dramatic comedy that brings Gaucher disease to the forefront of the conversation on a first date.

MEDIA: All media interested in covering the event should contact Pamela Armstrong at pamela(at)redbanyan(dot)com. Speakers, ambassadors and other Gaucher patients will be available for interviews following the panel discussion. Interviews can also be arranged for advance stories.

About National Gaucher Foundation

The National Gaucher Foundation was established in 1984 with three goals: to find the cause of Gaucher disease, to develop a cure and to promote research and awareness of the disease. Following the determination of the cause and the creation of a treatment, the Foundation expanded its programs to include education and financial assistance for those living with Gaucher disease. Today, the National Gaucher Foundation is the only independent, not-for-profit educational organization in America that caters to individuals and families with the disease. To learn more about Gaucher disease or the work of the National Gaucher Foundation, visit http://www.gaucherdisease.org

 

SOURCE National Gaucher Foundation



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