Thursday, August 24, 2017 at 9:00 AM PDT
Friday, August 25, 2017 at 4:00 PM PDT

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330 De Neve Drive,
Los Angeles, CA 90095

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Lale' Welsh 
NDF (Neuromuscular Disease Foundation) 


Sponsors and Partners


Support the NDF

Support the Neuromuscular Disease Foundation (NDF) by using smile.amazon.com every time you shop online through Amazon.  The AmazonSmile Foundation will automatically donate 0.5% of the purchase price at no cost to you each time you make eligible purchases. Just type in Neuromuscular Disease Foundation as your designated recipient and Amazon will do the rest.  Visit www.CUREHIBM.org to learn more about us.


NDF Symposium on GNE Myopathy at UCLA

Please join us for our 4th Annual Symposium on GNE Myopathy (HIBM), a two-day, fact and fun-filled event including up-to-the-minute information, presentations, panel discussions, and individualized breakout groups for patients; caregivers; and scientists, physicians, and industry professionals.  Meals will be provided for all attendees.

***PLEASE NOTE: AGENDA IN PROGRESS: Subject to change***

August 24th, 2017: Day 1 Agenda 9AM-4PM


  • Dr. Ichizo Nishino, National Institure of Neuroscience, Toyko, Japan
  • Dr. Stella Mitrani-Rosenbaum, Hadassah Medical Center,     Jerusalem, Israel
  • Dr. Hanns Lochmuller and/or Dr. Oksana Pogoryelova, Disease Monitoring Program (DMP), Newcastle upon Tyne, UK 
  • Dr. Tahseen Mozaffar, Univeristy of California Irvine, Irvine, California
  • Dr. Marjan Huizing, National Institutes of Health (NIH), Bethesda, Maryland
  • Dr. Stan Krolczyk, Senior Medical Director Medical Affairs, Ultragenyx, Novato, CA
  • Dr. Madhuri Hegde, Perkin Elmer, Atlanta, GA
  • Panelists: Dr. Siavash Kurdestani, Dr. Perry Shieh, Dr. Wayne Grody. 


  • 6:30-10:30PM Dinner & Cocktails and with the Scientists. (Symposium attendees and NDF supporters invited). 



August 25th, 2017: Day 2 Agenda 9AM-4PM


  • Discussion on Genetic Testing and centralized database by Dr. Andy Kogelnik, Open Medicine Institute
  • Panel Discussion with Dr. Laura Rufibach, Dr. Jerry Mendell, Dr. Carmen Bertoni, and Dr. Andy Kogelnik
  • Break out sessions for scientists, patients, and caregivers
  • Fitness & Nutrition for patients and family: Yoga, Meditation, Cooking with foods rich in supplements and Sialic Acid


  12-4PM Break out sessions:

    A. Consortium meeting for scientists and industry professionals

    B. Support group meeting for Patients ONLY

    C. Support Group meeting for Family Members

Lodging Information

Lodging for overnight guests of NDF will be provided at UCLA.  Other attendees are welcome to contact  NDF for accommodations at UCLA.


Additional nearby hotels are available for your booking.  These include:

Address: 425 Westwood Plaza, Los Angeles, CA 90095

Phone: (855) 522-8252


Luxe Sunset Boulevard Hotel

Address: 11461 Sunset Blvd, Los Angeles, CA 90049 (2 miles from UCLA)

Phone: (310) 476-6571


Hotel Angeleno

Address: 170 N Church Ln, Los Angeles, CA 90049 (2 miles from UCLA)

Phone: (310) 476-6411


W Los Angeles-Westwood

Address930 Hilgard Ave, Los Angeles, CA 90024 (1 mile from UCLA)

Phone(310) 208-8765