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Crowd-sourced funding provides missing help for rare genetic diseases
Date:2/27/2013

Tel Aviv 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 US-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 Dr. Noam Shomron of Tel Aviv University's Sackler Faculty of Medicine, RGI's vital mission has come to Israel the first international branch of the organization. Its online home is http://raregenomics.org/world_Israel.php, and it has launched its first appeal for two Israeli children at http://raregenomics.org/donors.php.

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, Drs. Lina Basel, Shay Ben-Shachar, and Hagit Baris.

The services that the organization provides are sorely needed in Israel, says Dr. Shomron, who is the director of Israel's RGI. Both Jewish and Arabic populations in Israel are plagued by a unique pool of genetic diseases. "There are decades of genetic puzzles in the Israeli population, and we are hoping to solve a few of them," he says, hoping that RGI-Israel will help provide the funding to support these families in need.

A community effort

A decade ago, the human genome was sequenced for the first time. The process cost over a billion dollars and took more than ten years to complete. B
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Contact: George Hunka
ghunka@aftau.org
212-742-9070
American Friends of Tel Aviv University
Source:Eurekalert

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