Beverly Hills Rotary Club Luncheon, November 2022
NDF was proud and honored to receive a generous grant from the Rotary Club of Beverly Hills to support our Emotional Wellness Clinic. We are grateful to long time supporter and Rotary Club President Dr. Sharona Nazarian, who presented the award to NDF Executive Director Geoffrey Gee and Emotional Wellness Director Carol Gelbard.
Rare Disease Day in West Africa, February 2020
Organized by NDF Certified Patient Advocate, Okoma Rose, and sponsored by NDF, this meeting sought to educate doctors and scientists in West Africa about the challenges of diagnosis and management of GNE Myopathy and other rare neuromuscular diseases in the face of therapeutic advances in the rest of the world. Doctors were also on hand to speak to patients from the region who attended and who struggled to be properly diagnosed.
Jewish Genetic Disease Consortium, February, 2020
As a member of the Jewish Genetic Disease Consortium, NDF organized and sponsored a series of educational events in Los Angeles for clergy and community members to hear presentations made by JGDC Project Coordinator Shari Ungerleider and Jscreen Director Karen Grinzaid about the importance of pre-conception genetic screening.
Patient Lunch, Palo Alto, October 2019
6th Annual NDF Symposium on GNE Myopathy, Tel Aviv, 2019
NDF’s Sixth Annual Symposium on GNE Myopathy was held in multiple locations including Tel Aviv, Israel and was attended by local patients, family members, scientists as well as a panel of international presenters. important, biologic samples were collected for inclusion in our biobank.
6th Annual NDF Symposium on GNE Myopathy, Philadelphia, 2019
NDF’s Sixth Annual Symposium on GNE Myopathy was held in multiple locations including Philadelphia and was attended by local patients, family members, scientists as well as a panel of international presenters. important, biologic samples were collected for inclusion in our biobank.
GNE Myopathy Patient Day, Ivory Coast, 2019
Orgnized with NDF by NDF Certified Patient Advocate, Okoma Rose, NDF sponsored this meeting which brought together patients, family members and physicians in the Ivory Coast in an effort to help educate people about and get diagnoses for GNEM Myopathy and other neuromuscular diseases.
NDF 5th Annual Symposium on GNE Myopathy, Los Angeles 2018
NDF’s 7th Annual GNEM Symposium, held at UCLA in Los Angeles, was a two day, fact-filled event that gathered patients, family members, leading scientists and expert physicians from all over the world in an effort to educate and share information about GNE Myopathy.
GNE Myopathy Patient Day, United Kingdom, 2018
Organized with NDF by NDF Certified Patient Advocate in the UK Mona Patel, NDF sponsored a GNE Myopathy Patient Day in Manchester, England for regional patients. Among the presenters was Dr. Nuria Carrillo from the NIH, Dr. Zohar Argov from Israel, and NDF C.O.O. Nancy Lurie.
Patient Day on GNE Myopathy, Istanbul, Turkey, May 2018
Organized with NDF by NDF Certified Patient Advocate in Turkey, Dr. Suleyman Kus, NDF sponsored a GNE Myopathy Patient Day in Istanbul, Turkey, for regional patients. Among the presenters were Dr. Coskun Özdemir, Founder and President of The Turksih Muscle Diseases Assocation, Dr. Stella Mitrani-Rosenbaum from Hadassah Medical Center in Jerusalem and NDF C.E.O. Lalé Welsh.
We are currently in the process of adding more of our past events as we build this page. Thank you for your patience.
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