Rare disease patients at PGI also fighting long wait for treatment

Despite eligible under Centre's National Policy for Rare Diseases, patients not receiving treatment amid six-month delay in funding

- Priyanka Thakur

CHANDIGARH: Over 190 patients suffering from rare diseases have been waiting in desperation for six months, hoping for grants under the National Policy for Rare Diseases (NPRD) to begin their urgent treatments at Post Graduate Institute of Medical Education and Research (PGIMER).

Already suffering from fragile health, these patients, several of them children, are also battling funding delay by the central government that has halted their desperately needed treatment.

Under the NPRD, the Union ministry of health and family welfare provides a one-time grant of 50 lakh to rare disease patients after their application is approved by the Centre of Excellence (COE) committee for Rare Diseases. PGIMER is one of 12 such centres in the country, catering to patients from across the northern region.

Each of these centres receives a revolving grant from the central government to treat rare disease patients.