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NDF SPONSORED GNEM ADVOCACY MEETING IN NEW YORK

HIBM (GNEM) ADVOCACY MEETING

Please Join us in Great Neck, New York on Sunday, January 11, 2015 to learn about the current scientific research in GNEM and what you can do to help! Please RSVP by January 2, 2015

Questions? Please contact Carol Gelbard at clhawk13@aol.com

AGENDA

11:00-12:00 Brunch

12:00-12:15 Welcome and Opening Remarks
Carolyn Yashari Becher, Esq.
Neuromuscular Disease Foundation
Los Angeles, CA

12:15-12:45 Overview of Current Research in HIBM
Zohar Argov, MD
Hadassah-Hebrew University Hospital
Jerusalem, Israel

12:45-1:30 Recent Results of the Sialic Acid Study
Heather Lau, MD
New York University
New York, NY

1:30-2:15 Recent Results of the ManNAc Study & NIH Natural History Study
Nuria Carrillo-Carrasco, MD
National Institutes of Health
Bethesda, MD

2:30-3:00 Why is the GNEM-DMP (Natural History and Registry) Important?
Alison M. Skrinar, PH.D.
Ultragenyx Pharmaceutical Inc.
Novato, CA

3:00-3:45 Genetic Screening for HIBM
Gidon Akier, MD
Icahn School of Medicine at Mount Sinal and SHORE
(Sephardic Heath Organization for Referral and Education)
New York, NY

3:45-4:00 Wrap up of Learnings
John Hakimi, PhD
Sage BioConsulting Inc.
Scarsdale, NY

Sponsored by the Neuromuscular Disease Foundation