Status of Rare Diseases Today

  This event is in partnership with Global Genes and the Sappani Foundation.

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India has one of the largest number of rare disease patients in the world and has recently come with a draft policy on rare diseases. This panel — consisting of experts in the rare disease space from India as well as globally renowned experts from academia, industry, patient groups, among others — will engage in a broad discussion and take stock of the state of rare diseases as well as the one year of the formulation of the Rare Disease Policy in India. The panel will discuss the status of rare diseases in the public policy sphere — successes and next steps, in addition to discussing genetic testing, a compilation of a national registry, what India could learn from the global experience and how India could help on the global rare disease research and policy.

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