Urgent Plea to Save Lives: Advocates Demand Action for Rare Disease Funding
Advocacy groups urge India's Chief Justice and Prime Minister to ensure sustainable funding for rare disease patients. Many children face life-threatening delays as financial aid caps are exhausted, despite prior court orders for increased support. The call for intervention seeks to prevent further avoidable loss of life.
- Country:
- India
Advocacy groups have urgently appealed to India's Chief Justice and Prime Minister for sustainable funding support in the upcoming Supreme Court hearing on November 7 for children and young adults with rare diseases.
Patients face life-threatening delays as the National Policy for Rare Diseases 2021 provides a one-time financial aid cap of Rs 50 lakh, leading to unmet treatment needs and avoidable deaths despite court orders to increase support.
With growing urgency, families and advocacy leaders call for immediate judicial intervention to prevent further losses and uphold the right to life for affected patients.
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