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India Landscape For Rare Disease Therapies: Hope, Despair And Funding Hoops

 
• By Anju Ghangurde

Policy advances, measures to back local production and crowdfunding action for gene therapies like Zolgensma bring hope for rare disease patients in India. Gaps in financing, high prices and an ongoing court case, however, stunt efforts to ensure timely access.

Rare disease
Progress and challenges for rare diseases treatment in India (Shutterstock)

The India story for rare disease patients and therapies is a mix of hope and despair.

While there have been a string of regulatory and policy advances including efforts to nurture domestic production of orphan drugs, funding gaps and high prices for therapies and a court case are

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