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News & Events

Past Events

NDF Gala for the Arts

See more from the Gala for the Arts, here

5th Annual Symposium on GNE Myopathy

See more from the 5th Annual Symposium, here.

UK GNE Myopathy Patient Day

See more photos from the 2018 UK GNE Myopathy Patient Day here.

NDF Ambassadors Host Awareness Dinner

See more photos from the event here

Celine Talk Series Event - Madison Ave, New York

Celine brought awareness to the GNEM community during their Talk Series Event and donated a percent of a week’s worth of purchases made at their Madison Avenue location to the GNE Myopathy Community through NDF!

Patient Day on GNE Myopathy (HIBM) - Istanbul, Turkey

Click here, to see more photos from the 2018 Patient Day on GNE Myopathy (HIBM) in Istanbul, Turkey.

2018 GNEM Meeting in Italy

2017 GNEM Meeting in Israel

Click here, to see more photos from the 2017 GNEM Meeting in Israel. 

'Eyes Wide Shut' Hosted by The NDF Ambassadors - Hollywood, CA

Click here, to see more photos from the NDF Ambassadors' event. 

4th Annual NDF Symposium on GNE Myopathy - UCLA

Click here, to see more photos, watch presentations, and learn the impact of the 2017 NDF Symposium. 

Celebrating GNEM And Rare Disease Patients - Ultragenyx 2017

Meeting GNEM Patients and Attending The World Muscle Society Conference, 2016 Spain

NDF Patients Day

New York Chapter

Patients Day Symposium - 2016 UCLA, Los Angeles. California

Images from Patients Day Symposium, August 31st- September 1st

The NDF Hosted National and International GNEM Patients and many Esteemed Scientists at UCLA, Los Angeles, California

Volunteer Appreciation Luncheon and Fundraising with Maz Jobrani

Ultragenyx Patients Day, 2016 Novato, California

 Patients Day Celebration was held for all patients with Rare Diseases

A Narrative on the Patients Day .

Global Genes Conference, 2016, Huntington Beach, California

Attending the Global Genes Conference

 International Conference on Neuromuscular Diseases in Toronto, Canada, 2016

Research Lab, Israel

Dr. Argov and Dr. S. Rosenbaum Conducting Research, Hadassah, Israel

2015 Patient Day Symposium  



2015 Black and White Ball 

October 14, 2015 at the Beverly Hills Hotel 

2014 Black and White Ball 

November 13, 2014 at the Beverly Hills Hotel