Families Plea for Sustainable Rare Disease Funding

Patients with rare genetic disorders at AIIMS face life-threatening situations as government's funding runs dry. Despite court directives, funds remain unreleased. Families highlight urgent need for sustainable treatment solutions. Advocacy groups demand structural changes to National Policy for Rare Diseases (NPRD) 2021 to secure long-term care.

Patients suffering from rare genetic disorders known as Lysosomal Storage Disorders are in a life-threatening situation at AIIMS after exhausting government's one-time funding under the National Policy for Rare Diseases (NPRD) 2021.

Despite a Delhi High Court order directing the release of immediate funding, the Ministry of Health and Family Welfare has not taken action, leaving families of patients desperate. The Lysosomal Storage Disorders Support Society of India is appealing for sustained treatment for Gaucher disease patients.

The situation is dire for young sufferers like Ashok Kumar, Abdul Rehman, and Alishba Khan, whose treatments have been halted, leading to severe health declines. Advocacy groups emphasize the urgent need for sustainable funding beyond the existing one-time aid, urging revisions to the NPRD 2021 to ensure continuous care.

(With inputs from agencies.)