Since 2006 NDF has been proactively seeking and funding clinical research projects to help understand GNE Myopathy (HIBM) and to hopefully help find treatments and cures. NDF is a world leader in funding scientists, universities and laboratories, the results of which have proven instrumental in how new studies are built.
To date, NDF has funded over $1 million to researchers and scientists in the field of HIBM/GNE Myopathy worldwide. Grants have been made through organizations such as Hadassah Medical Center in Israel and UCLA, and now these efforts have been expanded to include sample collection and genetic sequencing in countries with a higher than average rate of HIBM carriers, such as in Iran, India and Uzbekistan. These samples provide a unique opportunity to learn more about the disease.
Current and upcoming projects this year include funding of basic science, genotype/phenotype storage, and analysis, as well as gene therapy.
Currently, there are clinical research being run by National Institiutes of Health (NIH) and Ultragenyx Pharmaceutical. If you are interested in becoming involved with clinical research, please click the above links. Or, to learn more about clinical studies in general, refer to CRISPR.
For more videos on clinical trials click here
Photos below show Dr. Hossein Khademian visiting community centers in areas with high GNEM populations in Shiraz, Insfahan and cities in Uzebekistan and a photo of the awards given at our 2014 Gala.