Funding Rare Disease Research With Crowdsourcing

A Tel Aviv University researcher has established an apparatus to help Israeli families with rare genetic defects undergo testing and, it is hoped, eventually obtain treatment.

The project will be funded by visitors to a website with personal stories of patients who choose to donate toward helping a specific family. Such testing is not in the basket of health services funded by health taxes and government subsidies.

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The effort was announced on Wednesday on the eve of the International Rare Diseases Day, which will be marked around the world on Thursday.

The method of funding is called “crowd-sourcing,” referring to a collective effort by individuals who network and pool their money, especially via the Internet, to give financial support to projects initiated by other people or organizations.

As these “orphan diseases” affect only a small number of people, drug companies and governments spend little money to research rare genetic disorders. The US-based nonprofit Rare Genomics Institute (RGI) is working to address this problem by “crowd-funding” – allowing people to donate online to cover the genetic testing of children who are struggling with rare diseases.

Jews and Arabs – common victims of orphan diseases

Dr. Noam Shomron of Tel Aviv University’s Sackler Faculty of Medicine has adopted the RGI idea and set up an Israeli branch. The organization has just launched its first online appeal for two Israeli children.

As many as 250 million people around the world suffer from orphan diseases; however, since there are so many but so few people suffer from a specific one, there is little hope for diagnosis or treatment.

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Via the Jerusalem Post
Photo by National Human Genome Research Institute