Beverly Hills Rotary Club Luncheon, February 2020

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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.

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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.

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NDF International Scientific Consortium Meeting, Los Angeles, 2019

NDF hosted an unprecedented gathering of members of its consortium of international scientists and doctors in Los Angeles in our continued effort to work collaboratively with all scientific stakeholders working on GNE Myopathy.

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NDF Arts Gala, Los Angeles, 2019

NDF’s second annual Art Gala was a huge financial success and brought together community members, patients, and scientific consortium members from all over the world.

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Patient Lunch, Palo Alto, October 2019

Genetic Screening Event, November 2019

In partnership with Jscreen and Sinai Temple in Los Angeles, NDF sponsored an event for young adults to be screened, at no cost to them, for genetic diseases.

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PADM Patient and stakeholder meeting in Tokyo, Japan, 2019

NDF CEO, Lale’ Welsh, presented at and participated in a symposium for patients hosted by the Patient Association for Distal Myopathies, our partners in Japan.

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GNE Myopathy stakeholder meeting in Mumbai, India, 2019

NDF CEO, Lale’ Welsh presented at and participated in a GNE Myopathy Stakeholder Meeting hosted by World Without GNE Myopathy, our partners in India.

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GNE Myopathy stakeholder dinner in Mumbai, India, 2019

Organized by NDF Certified Patient Advocate in India, Ashutosh Verma, NDF hosted an event for GNE Myopathy patients in India where important, biologic samples were collected for inclusion in our biobank.

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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.

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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.

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NDF Ambassadors – A Night Together Dinner

NDF’s Ambassadors gathered a large group of young adults together for an important evening of education about GNE Myopathy and a presentation a from a genetic counselor about the importance of pre-conception genetic screening.

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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.

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NDF Gala for the Arts, Los Angeles 2018

NDF’s first ever art gala was a tremendous success, raising over $1Million toward our research and programs.

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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.

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Celine NYC, 2018

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!

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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.

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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.

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We are currently in the process of adding more of our past events as we build this page. Thank you for your patience.

If you have any images from NDF events you would like to share, please contact us.