For the estimated 250 million people worldwide who suffer from rare diseases, there is little hope for diagnosis or treatment. Because each individual disease impacts so few people, hardly any funding is allocated to research, leaving many without medical options. The U.S.-based non-profit organization Rare Genomics Institute (RGI) is working to address this problem by “crowd-funding” — allowing people to donate on the Internet towards genetic testing for individual children who are struggling with a rare disease.
Now, thanks to Noam Shomron of Tel Aviv Univ.’s Sackler Faculty of Medicine, RGI’s vital mission has come to Israel — the first international branch of the organization.
Based at the TAU-affiliated Sourasky Medical Center and Rabin Medical Center, RGI-Israel will help families with children impacted by rare genetic diseases find support and care through advanced genetic testing. The Israeli branch is run in collaboration with three of Israel’s top geneticists, Lina Basel, Shay Ben-Shachar and Hagit Baris.